Category: wisdom

If you’ve ever looked at that iconic photograph of earth sent back from space by the Apollo 17 crew in 1972, chances are you may have felt very small. The things you do can seem insultingly unimportant, useless, or a total waste of energy—the effort, our pain, the whole point becoming lost in the incomprehensible hugeness of it all. In one snapshot is a glimpse of our existence within the context of an entire planet: billions of people.

There we are, floating, in orbit, rotating at some figure I could never pretend to compute or understand. A sphere of blue and green, dusted with blurs of white clouds we learned the names of in fourth grade. Cumulonimbus. Stratus. But it expands even further. A planet, within a galaxy, within a solar system, within a boundless universe for which we can only account for a relatively small portion. Why am I worried about the U2 album that came pre-programmed on my iPhone? I didn’t ask for that album Bono, I didn’t ask! But you look at our planet like that, and sometimes it helps spot spilled milk when we’re unable to discern it ourselves.

Snapshots just like this are every where in all types of forms– landscapes like the ocean, trees hundreds of years old, music that hits us somewhere deep or a night sky full of stars. They stir inside us some sacred moment demanding our attention. Attention beyond the five senses. These are the stirrings of Consciousness, I think. Or becoming aware of it. That divine desert in our depths, dormant and shy, but reliable like a sleeping dog, waiting on us to wake up and snap our fingers, let him lead the way. Always that calm sits in the background of our thoughts—that sturdy part that never leaves. The gap between breaths, but we forget. Last week I sensed it watching the wind rustle the leaves of the bamboo in our yard for I don’t know how long. I don’t get out a lot.

I know this is Consciousness I’m confronting, because a stillness envelops me, time melts like a clock in a Dahli painting, and the typical limits and boundaries fade. A noise that usually dominates the atmosphere diminishes to silence. I haven’t arrived or gotten anything, I’ve simply met the present moment and there the forms, my thoughts and the sounds seem to run out of ink. A space is required for Consciousness to awaken, but it’s usually drowned out by the incessant noise of our lives. Opinions and drama and auto-pilot tasks and Snapchat. Trump. Chatter. Twitter!

We are bombarded by distraction, no doubt, and there will never be a shortage to keep us looking the other way. Because consciousness doesn’t operate according to the limits of space or time, we are glimpsing eternity in that instance. A non-quantity! It’s no wonder we can’t hold the reality of this perspective in the forefront of our minds for very long. It almost operates on a separate plain. Size without a producable sum total– time beyond a unit of measurement: this is not how we learned to understand the world. It’s like trying to remember what words looked like before we learned to read. Then going out in the world and being told not to interpret the thousands of messages we’re assaulted by. Even Monty knows this is basically impossible. It will take some time to unlearn the default.

So we can only live in that space for so long before it vanishes out from under us, like a dream that dissipates as we slowly awake. The sky then fades back to a ceiling, a black ceiling with white dots. The ocean returns to an aquatic location where we swim and fish and take family pictures at sunset. And why not? Sunset by the ocean is the perfect backdrop for photos.

This Consciousness is hard to reconcile with the world we live in though, because it veritably negates the way we’ve been taught to perceive the world for centuries. At the same time it also perfectly encapsulates Tolle’s explanation of our life here, which he emphasizes is not according to time, but to being awake in the now–the closest thing to time that actually exists. The Eternal Moment, he calls it,which works out in every scenario where you try and deconstruct it. I’ve tried. Still, when you’re down here in the dirt, when you’re in pain, it seems far too simple a way for things to operate.

So when the window opens, we can expect it to be small, but we should hold on as long as we can. I know that’s where a much more permanent and truthful dimension in us lies, it just hardly gets time out of the box. So I try not to be afraid of the quiet, of being alone, of having nothing “to do”. In these uncommon, custom moments, forces larger than us might be at work, awakening something that the whole world, not just us, is in great need of.

Most nights, I walk home from my parents house with Monty. They lock the door behind me and sometimes my mom yells Watch for snakes! Marc flips the switch and the Christmas lights in our trees illuminate a path to my house, a whole 15 steps away. Monty bolts off feigning a hunt of a squirrel or raccoon or some other Southern vermin. Midway between our houses is a small wooden path over the ditch that connects their yard to my driveway. Every time I reach that bridge, I stop, almost reflexively. I look up. Every time.

Sometimes I’m holding a laundry basket full of clean laundry with my head pointed upward at the sky and mouth agape like an idiot. I often don’t even remember making the decision to stop or look up, I just find myself with my head directed that way. For whatever reason I think, I’ll remember this when I’m older. I see these constellations of stars and whatever shape the moon takes and if I’m lucky, rarely, a shooting star. I remember then too: the sky is not a ceiling. The sky is not a ceiling. Then I try to reconcile that truth without my mind exploding, and consider that what I’m looking at goes on. Then I try to humbly just appreciate the beauty of this magnanimous thing and think think how I have absolutely no idea what the hell I’m looking at.

I just know I’m mesmerized by what I see and some part of me is drawn to look there, every night. I wonder a hundred things. A part of me thinks maybe it’s the soul making a nod toward its source. The same way we’re drawn to look out at the ocean or up at trees the height of sky scrapers. Maybe it’s just a bunch of burning gas with no intrinsic meaning and this is a crap romanticists idea of the cosmos. But that notion feels too simple when held up to the backdrop of the universe’s complexity. Just like staring out at the ocean. These stars, this water: all here before us. All to go on after we’re gone.

I think when we capture these hiccups in time, it’s not meant meant to make us feel small or meaningless; That none of this matters. But I do think it helps us remember that our time here is temporary. We don’t exist on earth forever, which the human being practically takes as an insult. How dare there comes a point when I die! So we don’t talk about it, fine. We don’t have to talk about it. But we have to deflect the thought that just because we live in a boundless world with a kazillion people that we’re somehow replaceable and we don’t play a very needed and unique part in the production. It takes a trust that’s very hard to reach for, let alone find. I don’t know what the answer is, but I can assume one is that we’re not meant to torture ourselves over not knowing it. Maybe living with the mystery while trusting our path is answer enough, for now.

I’ve been writing about this for a while because one, my brain has run the speed of sap. And two, I’ve been sick every day this week and stuck in a half conscious state in bed. The last 4 months haven’t been much better besides an occasional ‘OK’ day. I realize compared to some of my sick counterparts, thats nothing. But still, it’s hard. It’s like you’re tethered to the world, and you slowly start to drift outward, losing your connection to people, your passions, a reason that makes sense. The further away you float, the more convinced you become that cutting the chord would be no big deal. That couldn’t be further from the truth, and I don’t say that flippantly. I say it as a testament to the power of the mind and our thoughts. They can actually make us believe we don’t matter, which is a dangerously powerful indictment that can be incredibly hard to fight off. I’ve been there, and I’ve had people help dig me out of the hole. I’ve been lucky, and I know that.

During trying times like this when my body feels like it fails me repeatedly, I’ve lost my belief that there is worth in a life spent sick this way. But that stillness, that other plain that awakens under night skies or oceans that you can’t see the edge of, it is so much more powerful if we only give it space to grow. Even just recalling that I’ve felt it before can help me remember that these periods in the dark will be “burned up by the light of consciousness” (Tolle), as they have before. I am still learning. Part of that lesson is to accept the mystery of pain, to even yell at the sky about it if that’s what has to happen, but to keep going, nonetheless. Even if you don’t trust where you are, keep going. At least allow yourself the relief of eventually finding a place you do trust. Like Churchill said, If you’re going through hell, keep going.

Life is working in pieces, one day at a time, like always. It doesn’t have to make sense in order for us to be happy. I wish it would– I feel violently curious for answers sometimes, knowing good and well that no answer will bring back the things I’ve lost. But here we are, who we are, with the hand we’ve been dealt. It matters now how we play our hand in the game. With carefulness, attention, and reverence that you’ve got a hand at the table at all. Be still, make space. And look up once in a while.

I’m talking to myself again. It doesn’t matter. I still I believe there are answers everywhere. We don’t have to know them to awaken the space where they might be easier to find.

Post-Holiday Winter, I should specify. It’s wearing on me. Draining and uneventful, this window of time moves so slowly it all starts to feel static. The date keeps changing but there’s nothing I can point to as proof of time passing. When I think back on it, this “leftover winter” has gotten me down in the past, too. It reminds me of the day after a night of drinking in college–hungover days where things on the outside are idle but there’s some invisible pressure that I ought to be doing something, anything, other than what I’m doing right now. But what that thing is I can never name. It may not even exist. I hold the colorless weather outside at least partially accountable. Winter is haphazard in New Orleans. Nothing sticks long enough to adapt a routine or wardrobe to. It goes from freezing and wet one day to weirdly humid and warm the next, but something about the sky, the whole atmosphere out there–it’s this oatmeal-hued environment that either mimics my insides or my insides start to mimic, and for whatever reason the affect is restless and un-motivating. It feels like weather that’s waiting on something and the ansi-ness rubs off on me. Then I find myself in this counterintuitive disposition of mostly-optimistic anticipation that something of note is going to happen in my life, mixed with that physically paralyzing effect that comes with a heart-ache depression. It’s like I’m sitting in a car all packed and ready to embark on some adventure with road-trip snacks (Gardettos) and a map, but there isn’t any gas in the car. So I just sit in the driveway, snacking on Gardettos.

One of the more confusing results of all this is that I can’t tell what direction I’m moving in. I realize that life and time pass in one way only, but somehow I don’t feel like I’m moving forward. Things are feeling stagnant mostly. And on really tough days they feel backward, a distorted Ground Hogs Day reality where I’m living one day over and over but I’m doing it worse than the day before. I notice during times like these, Oatmeal Winter and Illness at the Helm, one day can easily feel exactly like the one before it, and when I think too long on it, I can’t totally distinguish between the two. Or three or four. Of course it’s pretty easy for me to point my finger at the weather while this other important truth remains that I’m really sick right now–that I’ve been really sick since that crash the day after Thanksgiving and I haven’t really been able to recover. I guess sunny or not, this will get anyone down, even the most seasoned of sick people.

Being sick for months at a time poses an interesting creative challenge. Since you can’t often achieve a change in scenery, which is a widely agreed-upon method to upping ones mood, you have to find ways to see yourself and the world around you in different ways and with new eyes. This is really hard to do. Especially since there’s been such a distinct and relentless sameness to everything given the weather and my health and yada yada. It probably explains why I chopped eight inches off my hair, which helped, actually. But consciously I realize that becoming bored by your surroundings and state of being stems from a lack of proper perspective, and not a failure on the part of the universe to remain exciting. Everything around us is constantly changing, if even at a rate that is undetectable by our human eyes, and every day we wake up and live through is completely unique, never once experienced until now and impossible to ever be duplicated again. When I think about the fact that you never get to live the same day twice, it’s actually a comforting thought. Usually when I feel that I’m in some time warp with my struggles or misery or boredom on repeat, it’s because my vision has narrowed far too much and I’ve lost the horizon from my line of sight. Marc Nepo says “It’s the giving over to smallness that opens us to misery,” and I think that applies here. He says later “Misery is a moment of suffering allowed to become everything.” What a truth bomb. I think I read that line five more times after I underlined it twice. I know that when my focus zooms in purely on what is hard, the scope of my experience is cut in half, at least. This is why gratitude as I’ve come to understand and cultivate it is so immensely powerful. It wisely keeps and protects the good things in your life within your consciousness, within your line of sight. And it’s so incredibly true that the times when I am most unhappy, I’ve become lazy about remembering what I have, which is a lot. It’s not to say you can’t be conscious about the hard things or honest that they’re challenging or depressing. If you don’t express acknowledge these truths, the gratitude doesn’t have a chance to be authentic either. You have to be honest about both. But that’s the key, acknowledging one without forgetting the other. Grasping them both helps keep a broader and more accurate picture of your life within view.

Maybe this is a bit of what Nepo means when he talks about being a Spiritual Warrior–which sounds fancy but is definitively humble.

“All Spiritual Warriors have a broken heart–alas must have a broken heart–because it is only through the break that the wonder and mysteries of life can enter us. What does it mean to be a spiritual warrior? It is far from being a soldier, but more the sincerity with which a soul faces itself in a daily way. It is this courage to be authentic that keeps us strong enough to withstand the heartbreak through which enlightenment can occur.”

This was both comforting and angering to me. Angering because I think, why can’t the enlightenment come through cracks that aren’t caused by heartbreak and struggle? But this is a larger philosophical point. I think a more evolved species will be capable of this in the future–achieving higher consciousness and peace and gratitude without having to endure loss or pain or heartache to see it. But at this point within human evolution, our condition is still adapting. We haven’t caught on to the larger things yet as a whole. Think how bad we’re still blowing it. As removed as I feel from some of the real evils of the world and humanity, I don’t have to look very hard or long to see humankind missing the mark, in big and small ways, all around me, and that includes me and the seemingly petty ways I do this in my own life. Just because I can point my finger at ISIS and project all the evil onto them doesn’t make me superiorly more virtuous. What we see around the world are manifestations of evil that exist, if even dormant, within all of us. But I’ve wandered off-road again.

What’s comforting in Nepo’s words is knowing that our work ultimately is to become who we are at our center. And it’s funny how simple this task appears but how insanely hard and rare real authenticity is–being honest about our weaknesses, our beliefs, our limits, our expectations…It’s not as easy as I’d hope. And yet any time I face a truth about myself that for a long time I either hid or denied, I always feel stronger after having confronted it or shared it with someone I love. Even admitting the extent to which I was/am sick and the limits it places on my life is a challenge, even though totally obvious to an outsider. And I think this is why authenticity is such an important ingredient he includes in being a warrior–I don’t think it means knowing exactly who you are at all times, if anything this search feels like long–maybe it’s more the reverse: slowing peeling away who we aren’t until we become condensed, perfect little vessels of our true self. I think he’s also alluding to the idea that you can’t be conscious and inauthentic at the same time, and since ultimately we’re seeking whole consciousness, it requires in small ways along the path to acknowledge and cultivate the true self, while diminishing the layers that are not real.

The reason it angers me is because this formula is what I confront when reading all the spiritual masters and mystics and artists for thousands of years, and so it’s a clear truth that has persisted through the centuries–that it’s through hardship and pain that human beings seem to achieve deeper consciousness. Or at least, it is through this pain or suffering that we have the opportunity to grow and evolve consciously. It’s very easy to use pain as a reason to stop trying, and I’ve certainly done that a good number of times. But the most amazing people, those who seem to get it, thosewho appear to be made of peace on the inside and who exude joy outwardly and live their lives with creativity and virtue and light-heartedness, are not people who were given easy lives and thus are happy. They have all endured exceptional pain in their own ways, and have all found a way to use their most challenging of experiences to propel them forward, up, larger than their circumstances. The pain is still real inside of them, accessible and observable even to those on the outside–its not that they eradicated it, but somehow turned it into the material that would make their life good, whole. (See an amazing example of that here) They didn’t eliminate it, but they also didn’t use so much of it that their life was made up purely of struggle. This is another exploitation that’s easy to pursue with ones pain– using it as a platform for identity. The point, obviously, is not to become the pain, if we’re trying to transcend it. Wallowing in our own web of misery is an easy way to garner an audience but also to never evolve. To avoid consciousness. What I was trying to say when I began this thought of why this truth angered me, is that I wish human consciousness could evolve in easier ways than through pain. Of course, there are many other teachers that develop our soul and psyche, love namely, that aren’t as challenging as say something like, an invisible disease that pulls the rug out from under you. Everyday. :) But the truth is, the things which have taught me the most, shown me the gamut of human emotion and contributed to further compassion, kindness, capacity to love and ultimately consciousness on my end, have been these very deeply painful and trying experiences. And so I know that it’s true. And I know it’s vitally important what you choose to do with your pain or heartache, because not working to put it toward growth, gives it the power to swallow you up whole. It takes away from you, gives you a reason to be bad, to stop trying, to give up on the world. And that’s the truth– I say it because I’ve felt these things in the past in reaction to the tough experiences in my life, not always directly after they happened either. I still struggle with it. And it haunts me how easy it is to let those experiences take the wheel and drive me to unhappy places. Luckily we’re not powerless to pain. We have choices to make.

In a different way, using the pain to define your self, or wallowing around in it but never moving on from it is another struggle that I have to stay keenly aware of. I have a whole blog that is named after a damn disease that I am also trying hard to not let define me. It’s a huge part of my life and my story, but I have to keep it from growing so large that it takes up my whole view. I don’t want illness to be my only avenue for expression or creativity, and I definitely don’t want the art and work that I do pursue in the name of it to be all sad or negative or heartbreaking. Of course this isn’t always easy to do either, because writing about your health good, bad, or ugly, is naturally going to include parts that are bad and/or ugly. There is a lot of that in a life with illness. And my point when I began this project so long ago was to accurately portray what life with chronic illness actually looked like, since I’d confronted so many misunderstandings and false beliefs about it from people in my own life. Obviously some writing stems from hard days and dark feelings, and if you’re going to tell the truth, tell the truth. The point was to have a space where I could be honest and not polite for the sake of peoples small-talk comfort. BUT, the point I have to keep in mind is that illness is just one part of my life, and while it can feel like it defines so much of what I do, it is still just a part, but requires me to keep it right-sized. It’s only when my perspective zeros in on it do I lose the whole horizon, which are the amazing people in my life that I love so much and who love me back, the incredible house I live in, how happy my dog makes me every time I look at him, how lucky I am that I was given the gift of writing and this is one thing the illness hasn’t taken from at all. In fact, it’s what gave me a voice on this very medium. Hey look at that, the clouds are parting.

Winters are tough. They seem to be that way for a lot of people, North or South, sick or well. It’s easy to look around and see the same thing everywhere you look, because details are small and we’re usually too busy or too certain to stop and look twice or three times at things before we see the wonder in them. I know that during times like these, my life becomes very small because when you’re sick and weak like this, you’re constantly breaking everything down into smaller pieces so you can digest and complete them. You know how during hard times people will say “Just one day at a time”? Well during days like this, it’s really more down to a moment by moment basis. Mostly because each tiny little movement requires so much more from you than normal. It astonishes me how hard the simplest of tasks become when your body feels like it’s made of lead glued together with honey. It’s not just Wake up and make the coffee! It’s OK, sit up in bed. Ready? 1, 2, 3, sit up. Why didn’t you sit up? Try again 1, 2, 3. Come on, you can do it, just a little more, OK! You did it! We’re sitting up. Now, turn to the side to put your feet on the floor and stand up slowly. Feet on the floor, ready? Here we go. OK, feet are on the floor. Time to stand up. Heeeeere we go, and we’re dizzy we’re sitting back down again. OK, catch your breath. Breathe slowly. Calm down heart, all we’re doing is standing here. OK, try again on 3, rise slowly this time. Ready? 1, 2, 3 and we’re going to stand up. 1, 2, 3, we’re standing! Now, 12 steps to the kitchen, you got this, 1…2…3…

The kitchen is super close to the living room and my couch, and so sometimes I have to make a stop-off there first, which is perfectly portrayed in this cartoon by another blogger with CFS.

Anyway, notice the minuteness of each of those moves? I’m not exaggerating. This is simply what Bone Crushing Weakness does. Tasks this small shouldn’t require being talked through like you’re in a danged boxing match. But what can I say, it must be evolving some part of me so I can be the best of the best Spiritual Warriors ! Or just a normal 31 year old who gets out of bed. Either way. I think it’s this breaking down of things so they are doable is also what makes life feel so un-doable sometimes, because it all feels too big, too much, too long. Like I’ll never be able to get on top of things. But I know it’s because my vision is off and I have to be proactive about seeing my life and even these sometimes painstakingly long days against the larger backdrop of the world, of eternity, of the whole web of human existence. I find relief in seeing my life as a small spec within the largeness of our universe. I didn’t always feel that way, but now I know it means that enduring challenges come to an end. It means I am just one of many kajillion working parts and lives. It means that while not everything is up to me, the essential parts are, and I’m here because I’m capable of achieving them. I have to remember that as much as I can convince myself and be successful about it, I am not alone. That thought isn’t real. And my life is not impossible. And all of this, including colorless winter skies and lacking motivation and bone crushing weakness, will end. And I’ll look back on it one day, as the pain that moved me forward and opened the door for great things to happen, not as a shit show that ruined what could have been a good life.

Why don’t you take a bath Mary? Great question. I’m running on fumes, that’s why. I’m not just low on energy but also have that Bone Crushing Weakness going on, and it turns out the whole “cleaning-up” process requires much more exertion than you’d think. And you wouldn’t think about, because it’s not something you think about when you’re well. When you have a steady supply of energy on tap. A shower is just a precursor task on your way to doing other things. When you’re chronically ill, showering becomes the thing.There is no after. No next. To Do List: Bathe. End of to do list.

Not until I was at the mercy of illness did I understand the physical toll of hygiene and general appearance. This is mostly the reason that when I’m not out in public, I look like a deranged, color-blind Craigslist Killer. Just to give you an idea, besides my obvious and immediate desperation for a bath, I am currently wearing these green-striped pajama bottoms with mis-matched socks and a Hanes His Way V-Neck white t-shirt. This is actually one of my more cohesive looks, except that I ate a pomegranate last night and the dark crimson juice has splattered all across my chest. Did that motivate me to change my shirt? No. So now not only am I dangerously close to exceeding the point of no return in terms of lost humanity due to lack of cleanliness, but I also look like I’ve been bleeding, or that I made someone else bleed, which adds a concerning urgency to whatever it is I have going on right now, but I still can’t be bothered enough to do anything about it. So I just go on living my life and all this has really upped my game in terms of just how insane I can look on a Wednesday without really trying at all. Some would call that impressive! Anyway, I’d love nothing more than to do my laundry and my hair and alphabetize my life and put on a dress just for fun, but I can’t. Not at the moment. And it still surprises me how seemingly simple and small things start to become large and exhaustive, all on account of health. Not until you’re straining to stand at the sink and overwhelmed by the exhaustion you feel just having to move your tooth-brush up and down, or discover that your arms and hands have turned to rubber after using them to lather up the shampoo in your hair, does it hit you just how costly all these little moves are. Not until the smallness of previous, everyday tasks suddenly reveal their enormity do you fully appreciate how much exertion it takes just tending to this business of being alive– and this is before you even go anywhere or do anything! It’s silly really. Still, this does not change the fact that I really need a bath and if I go one more day without one I fear I’ll reach an irreversible state of unclean and I’ll never get it back. I’m also sort of hoping that by sharing this very inappropriate and vulnerable reality with perfect strangers and a few friends on the internet, that perhaps it will motivate me, give me that final ‘push’ to take the plunge, even though my whole body feels like the human equivalent of mashed potatoes. Mashed potatoes with death gravy!

I open with this unremarkable and embarrassing truth about my life because I think I’ve become a little too serious about the outcome of my writing in the last year or two and I’m trying to remember the importance of light-heartedness. And humor. I’ve noticed I put an extreme amount of pressure on myself to produce posts that are equivalent to biblical scripture, instead of remembering that this is a blog, a documentation of a small silly life, and it doesn’t always have to read one way or another. I find that way too often the writing doesn’t meet my expectation–which isn’t even anything specific, it’s simply a personal note of “It could be better.” As a result, I scrap a lot of work, I start over, or I just abandon it halfway thru. This is not a smart or productive way to go about any art, so I’m going to try to stop doing that and also remember to have fun. Oh yeah, fun! I forgot about fun! Usually the things I really enjoy writing are the things that people enjoy reading the most. It always translates. Too often it feels like extremely tedious work, which I think it has to be sometimes, especially if you want to always be improving the quality of your work, but more often it should just feel good. There should be some amount of recreation in it–this is my passion after all. I do it because I like it and it makes me better. Too often the process feels like taxes. So, I’m trying to remember to enjoy the process and the outcome, and also that not every word I write has to be a thought-provoking useable quote to put by my name after I die. “I need to bathe.” -M Gelpi, 1984-2016.

It’s been kind of a stupid few days. For one thing, I’ve bit my top lip no less than four times while eating. It frustrates me that my mouth is this stupid and that it doesn’t learn the lesson faster. Is it really so hard to GET OUT OF THE WAY. I think, I am 31 now, I shouldn’t have to explain to my gums that hey, when there’s food in my mouth and my teeth are moving up and down? Do you think maybe you could stay out of the way? Not a big deal or anything I just don’t want to EAT CHUNKS OF YOU and also I don’t like the taste of blood. With anything. So maybe stay clear of my teeth now? Great thank you. Glad we had that totally necessary talk. Now maybe I’ll tell my head to stay out of the way of my fist when I’m punching stuff! Hah, who am I kidding, I’m too weak to punch things!

What else? Oh yeah, I’m starving. I never mentioned this before but I’ve been battling an addiction for a few years now: it’s sugar. It’s very real!! So I basically eliminated all processed sugar as of Sunday, and it’s getting easier I guess. But even it being easier doesn’t change that it’s still ridiculously hard. And half the time I think the answer is, don’t diet. If you’re addicted to sugar, just stay addicted. Get fat. Get diabetes. Die young. This isn’t worth it. A cupcake would make me so happy right now, why am I denying myself this easy promise of happiness? Why am I making life this much harder on myself? Kiddingggg. But truly, I was addicted. Am? I think I still am, I’m just not feeding the beast. It began shortly after I began the corticosteroids–my appetite, my cravings for sugar, and my intolerance for it all simultaneously exploded at the same time and only got worse with time. I also became extremely hypoglycemic and would wake up in the middle of the night starving and shaking. I knew at some point I would have to do something drastic, not just because I was clearly addicted to something I didn’t even used to like, but my body was also rejecting the very thing my brain was craving. So many of my migraines occur after eating something sweet, typically processed sugar. Not to mention, there is just way too much junk in my trunk now. And also under the hood, and the front and back seats. Mostly, I just feel totally out of balance. I don’t like my relationship with food anymore. I used to just eat when I was hungry and then not really think about it. This whole sweet tooth thing is exhausting and also never-ending. I literally never feel full and I’m bored thinking about it all the time. So it was time to quit. Right now I’m just trying to get used to feeling mild hunger or major cravings but not immediately shoving food in my mouth as a response. Especially when I’ve already eaten a healthy meal and I know I’m not actually hungry. It sort of struck me, this totally 1st world moment of enlightenment: Oh yeah, I don’t actually HAVE to eat just because I feel hungry. I literally forgot that I have that option: NOT eating. Only an American would forget this, I’m convinced. So that’s going well. Wait no actually it’s really hard and taking a major adjustment but whatever, it’s in the name of being healthier and I can get behind that.

This morning, I was lying in bed and trying to find the motivation to get out of it, my eyes scanning the room looking for something inspiring to land on. Window. Wall. Dresser. Monty! Then I thought hey, I’ll just lay here and talk to Monty. Sometimes I share my ideas out loud with Monty because NOT EVERYBODY HAS A BOO WHO WANTS TO HEAR THEIR COOL TAKES ON LIFE. And I was like Monty, don’t you think it’s kinda dumb how hard life is? I mean if we were talking about Life Round 2, like if this one were a dress rehearsal, I would pull for “Less hard stuff, more funny stuff” in the next one. I just think the script is calling for more humor, more casual fun. It’s like the architect of the universe was listening to a playlist and when he got to this part, Coldplay got stuck on repeat and so there was a somberness infused into the day-to-day to stuff. He needs to listen to Pharell, or better yet, the band Fun! They would mix it up in a positive way, I think. And I’m sharing this with Monty thinking this is pretty good stuff, and what does Monty do? But abruptly start licking his butthole. As if the house was going to collapse on top of us both if he didn’t do it at that exact moment. Right in the middle of my Ted Talk (more like BED TALK) about how life should be tweaked for the next go around. At first I was like OH REAL NICE MONTY but then I was like God, who am I to make you feel bad about this? It’s probably the shitty food I give you making your butt itch, even though it’s expensive as shit. This country has major food problems, for dogs and people! Whatever I mean that’s what they say.. I don’t really know anything about it.

I’ve been writing this dedication piece on gratitude because despite my life looking and sounding like a disaster, it’s actually great in a lot of ways and has some really amazing parts and people that I am crazy grateful for. I’ve been writing it for weeks, in my normal tortured way, and there’s some good stuff there, but I think I just need to calm down. The piece is not just about saying thank you to the many, many people who have reached out and offered help to me in so many different ways this year, even though they are who inspired the piece. It’s more about the new and intimate way I’ve come to understand and appreciate gratitude in my life, which began with me recognizing gratitude during parts of my life that I wouldn’t traditionally say thank you for. There were extremely tough moments, days, and months this year. And yet somehow, there would be these redemptive moments within the pain, where I felt grateful for the exact experience, even if it wasn’t enjoyable or was causing me pain. This was never traditionally my approach to gratitude. I said thank you when I recognized that something was good, and there were always plenty of good things. But there was a whole new light shed this year, particularly during this winter which has been challenging in a number of ways, and yet the struggles still managed to produce these amazing moments of love, kindness, help, laughter, friendship..all in the midst of what I’d normally consider “disaster.” I write about it because I am continually surprised and amazed when I feel gratitude sneak up on me inside–I’ve been blown away by its reliability regardless of whatever scenario I find myself in. It was always easy to say thank you when everything went my way. But it’s been a new and enlightening experience stumbling upon it even when I’m lost or isolated or feeling totally discouraged. That’s changed how I look at everything now, and it really lightens the burden of whatever I’m carrying when I remember to try and find it. Anyway, that’s what the piece is about. Hopefully my brain will stop screwing around and I’ll get it cranked out sooner than later.

In the meantime I want to say that while I don’t always feel worthy of the love, help, gifts, messages and prayers that are offered to me by so many people, I do constantly feel incredibly grateful for the support that me and those who care for me have been given. Every way I’ve been helped or encouraged, no matter how small it may have seemed, always presses me to be better and to try harder. All we can do is our best, but being loved and supported the way I have continues to raise the bar for what my best can be. Thank you! All of you. My life is a perfect example of how needing help can be a really beautiful thing and not something to be afraid of — it teaches me to trust in humanity and to humbly surrender and accept what I can’t control, and I think to the giver, it teaches grace and encourages kindness. Somewhere in the middle is gratitude for us both.

I think I feel encouraged and insecure enough now that I’m going to attempt to bathe. Thank you for helping me.

The Grays: As in, A Case of ‘The Grays’ is an amorphous cousin of The Blues, less concrete and more insidious. Where The Blues are a despondency with traceable roots, a break-up say, the source of The Grays is less clear, confusing the host and lengthening the distance he feels between himself and the world around him. It’s a removal of sorts. It doesn’t make everything feel bad as much as it makes everything feel the same–it removes ‘specialness’ casting all things in the same ordinary light. It becomes hard to see yourself clearly, to feel what direction you should go in. A person with The Grays can’t point to a particular occurrence and say Aha! This is the source of my sunless nature! All he can say is that a colorless film has covered his eyes, rendering all choices, all feelings, all consequences the same. It makes trying and not trying essentially the same–it dissolves meaning, in other words. Love, apathy. Good, bad. Going, staying. Same, same. Does he want an apple? Sure, he’ll take an apple. But it would be just the same if he didn’t take the apple. Eating it won’t bring him any satisfaction, and not eating it won’t make him wish that he did. Take it or leave it. Take anything or leave it. Same, same.

Correct, This is what I got when I googled the word Gray. You’re welcome.

I can’t say exactly what kicked me into the slump I have named The Grays. I suspect it had a little to do with the crash I’ve been in for a few weeks now and from which I am still not recovered. I know that often when my body gets overwhelmed for a long period of time, eventually ‘it’ seeps into my mind, my emotions, and I feel psychologically overwhelmed as well. I’ve been short of breath on my feet lately. Dizzy, heavy, and extremely weak, particularly when I try to stand or walk or move around. My legs feel like cemented blocks that are so heavy to pick up and put one in front of the other when I try to move, that I mostly haven’t. It’s been that way for weeks now, and staying sedentary too long would make anyone restless I’d guess. It gets old having to put off things until tomorrow that you already put off until today, over and over and over. Your surroundings start to grow stale, and wanting to change them but being too sick to get out of the house becomes a whole other challenge. Of course, this isn’t my first rodeo. I’ve been through crashes much longer and worse than this, and I’ve become pretty good at riding out sick times without giving in to despair. But that’s the thing– this isn’t really despair. It’s not heartbreak or grief or anger. It’s more like a hole where my feelings are supposed to be. A lack of feedback, a lack of identity, an inability to see myself in the world and where I fit in it. It’s this dimming effect on my surroundings and myself, blanketing the normally vibrant world in the same, colorless hue. Gross! This will not do.

Another entirely meaningless photo that came from googling gray.

The worst part about the Grays is not being able to easily or immediately pinpoint their cause, making it much more difficult to navigate and fix. It also usually means feeling bad about the fact that you feel bad, because you feel like there’s no real reason, or maybe no good reason, that would explain the source of your gloom. So you feel more bad. Have you ever cried and not really known why? It’s the worst! You start crying more because you’re like “Why am I even crying right now?!” Which results in a louder eruption of wailing, sometimes causing you to snort and sniffle, which might lead to a weird outburst of laughter, highlighting the absurdity of it all but then segueing back into loud sobs and a near certainty that you must be insane. It’s an emotional disco party! The funny thing is how absolutely lost I can feel in the midst of crying, buried and convinced there is no way out of the state I’m in. But almost immediately afterwards, in those moments of recovery where you’re sniffling with a tissue and taking those shaky, post-sob deep breaths, I always feel relief. I feel incredibly lighter and way more capable of finding resolve. There is always a rejuvenating sense of clarity–even if I’m still uncertain about the cause of my feelings. I can see myself again. I can see the other side.

One more just for funsies.

I think sometimes the Grays emerge because I endure pain and I’m not always conscious that it hurts. Sometimes things make me sad unconsciously and I’m not so aware of them of them, or I just don’t understand why it’s painful, so I end up not giving it enough attention. I brush it off or just move on the next thing. But you can only do that for so long. There is always a breaking point. The pressure builds, the feelings need an outlet, and so there you are crying your eyes out for an hour after finding a dead mouse in a mouse trap. (True story)

But couldn’t it be said that I’m just a huge animal person and given that even dog food commercials make me cry it wouldn’t be unreasonable for me to cry at the sight of a dead mouse? Maybe. But I don’t think it’s that, completely. All things convey life and death in their own way, and they’re all reminders of the strange contract we had to sign. But I think it’s simpler than that and I’ve been sort of dense about it. I think the truer source is that sometimes, being sick for so long really just gets old some days, and I don’t feel strong enough to smile about it and say that I haven’t given up hope. (I haven’t, and I really never will.) But some days, maybe it’s OK to just admit that things are really hard right now, that life is getting you down, that you wish you could change the things you know you cannot change. That you’re blowing it with the Serenity Prayer! Perhaps the Grays are a result of not giving our inner selves and feelings enough examination. A voice. It’s not that we should complain and whine. It’s more about acknowledging what is true despite the vulnerability it will highlight. Maybe sometimes you just say it out loud and look it in the eye and admit hey, this hurts. This is hard. I need some help. I think voicing the feelings and allowing yourself to be sad without immediately trying to fix it, helps open up a space between you and the pain, and within that space is where you can start to understand and move through it. Awareness helps bring even the smallest amount of light to whatever hole you find yourself in, and that light illuminates what’s on the other side. Finally, you start to see a pathway out. But it means going through first.

The challenge is always to express and validate the feelings without succumbing to them, getting stuck in your story. The opposite of dismissing the pain is letting it take over, using things that have happened as a crutch for negativity or allowing them to defeat your hope and enthusiasm. This is what encourages the victim mentality, something I work consciously to stay away from because it seems unsettlingly easy to go there and stay. It takes hard work to locate and live in the middle of these two roads–and I’ve found myself lost many times, too far down one or the other. Saying it and feeling it too much, letting it dictate too much of me. Or convincing myself it’s not worth talking about, to deal with it alone, not asking for help when I actually need it. Finding my way to the middle is where I see things the best. I can see my life from a distance there, unencumbered by feelings about it. I can see my true self without my opinions distorting it. I can reconcile who I am with the kind of life I want to live. I think so often the source of my pain is that I’ve convinced myself I can’t do or achieve the things I want or am meant to because certain things, like being sick, are inhibiting me from achieving them. But when I reflect deeper about this I think the opposite is true. I think what I am meant to do and be is actually born out of and possible at all because of these very unique conditions–the ones I didn’t choose. The ones that were not a part of the plan. Perhaps they are in fact what’s allowing my real purpose to unfold, and not hindering it at all. Maybe all of this comes down to a simple shift in perspective: stop seeing things as road blocks that are actually opportunities.

Of course, it’s always easier to write and say these things than it is to practice them. I know that words only have so much power, and just writing them down doesn’t make them any easier to live by. But writing has always been a relentless reminder of what is true and good in my life. It helps sort out the real from the meaningless. It seems to function as a mechanism of discernment for me; a sifter of stories from truth. Thomas Keating wrote that “Discernment is a process of letting go of what we are not.” Sometimes I find peace in sitting down to write, because it forces me to come to terms with the truth without feeling defeated by it. Like Nepo says, The instant fish accept that they will never have arms, they grow fins. Sometimes it helps me remember that despite being sick, I can still become who I am meant to and do the things I find most important.

I find that opening myself to the vulnerability of what might be revealed, I usually unlock some truth when writing that I’ve forgotten along the way. It forces me to look past the petty things that sometimes I lean on too heavily on. It encourages me to examine the deeper meaning of things that on the surface can seem painful without a purpose or value. I am often surprised by what emerges when I sit down to write–it’s rarely what I intended or consciously planned to address. I know it sounds a little pie in the sky, but often the words don’t feel like they’re coming from me exactly. Sometimes I don’t even totally understand them. I feel more like a medium thru which other sources are using to reveal more important things than whatever crap I planned on. This is when I understand our passions being called “gifts.” The words are not mine– More than writing well, my job feels like listening well, and then very carefully relaying whatever’s coming through. It’s a sort of prayer, therapy, and mediation in one.

I think the connections and truth and awakening that writing provides might be what all our passions do for us (and the world) on a deeper level. Gardening, physics, furniture making, piano, whatever–they’re all devices that help us see the world more clearly and to feel distinctly our unique “spot” within it. They’re a way to figure ourselves into the cosmic equation and have it equal One. They are reminders of our humanness. All I know is that the longer I go without writing, the further I feel from myself, and the more distant I feel from the world. Lost this way, it becomes much harder to find that path to the perfect middle where I can myself and the world with the right set of eyes.

It might seem surprising since I tend to do it a lot, but I am always extremely cautious to write about the dark stuff. I always hesitate to post during the hard days, not out of fear really, but more because I know that what I give my attention to is extremely important both in my physical and mental health. I have to be careful about where I direct my focus. My hope and my experience is that writing things out helps to reveal things bigger than the pain. It brings a level of consciousness to wherever I am, and that helps see my reality better. My goal is always to find something good to take away even from the crappy times, because for some annoying reason, pain is extremely educational. But in order to grow from it means we cannot stop at the pain. That’s where we start–the reaching out, sharing, crying, and writing all provide a way to feel and understand it, and also to keep moving forward. I’ve basically done all of those things in the hours I’ve spent writing this. So thank you for letting me go on for so long. Whoever you are. Because you know what? I don’t feel so buried by these Grays anymore. I haven’t succumbed to stagnancy and I feel a space between the pain and me. I feel more connected to the world, and I’m starting to see it in color again.

Finally, yesterday, the teeniest tiniest flicker of relief. I felt it. Though incrementally small, it was the spark suggestive of an end, or at least of an improvement. It’s been a very sick few days. But yesterdays glimmer of improvement brought me to the surface where I could breath again. It wasn’t major, but it was enough. Today, another slight improvement. I actually left the house and went to the pharmacy. That’s what we call progress people.

I don’t know what exactly caused this crash. The travel, new Miami germs my body couldn’t handle, the woman with the wet cough on the plane? Who knows. It doesn’t really matter I guess. I could feel something in the works throughout the trip. I felt rough most of the time, but, I still enjoyed my stay. Miami is nice and my family rocks. My brother Nick is another mentor of mine and always encourages my creative endeavors. He’s someone who materializes ideas instead of just writing them in a notebook, which is what I do. I envy his work ethic and it was nice to be around artists at work. I worked through some writing problems and we’ve begun a side project which I think will be great. It was nice. Look, I even caught a fish.

Unfortunately I think my brother later used this fish as bait.

Huge right? Of course I sort of declined at the end of that day and into the last few days, until I returned home Thursday. By that night I crawled into bed and as I pulled up the covers, the invisible monster went to work. I could feel it creeping over me, up through my limbs and under my fingernails. When I woke Friday morning it had swallowed me whole. I was submerged. The next three days were spent in bed in a dream state with intermittent stints of wakefulness. I’d awake for brief periods, feed Monty, feed myself, then dissolve into dream world again. Unfortunately I could feel the pain on both sides. In my dreams I’m looking for pills and can’t find them. Or I can’t get their lid open. That happens in real life too.

It can be disorienting when you spend more of your time in dreams than awake. Every time I awoke I had to readjust to the surroundings, remind myself where I was. Everything was hazy and I felt weak and sedated. My body was out of juice; every move I made felt enormous and taxing. It’s a strange condition to be in, but that’s how it goes in a crash. All you can do is rest and wait for your body to come back. Luckily, Monty barely left my side the whole time. Each time my eyes blinked open, I’d spot him sleeping in some ridiculous position. As soon as I stir he’s on all fours, ready to go. I hate not being able to play with him more, but he sticks by. Sleeps when I sleep, eats when I eat. His loyalty astounds me, especially when I’m sick. On Saturday night I had a nightmare that I couldn’t wake out of. When I finally came to, Monty was on his feet, panting next to the bed. I could tell he’d done something, made some noise maybe that woke me up, though I don’t know what. He is my hero. For reals.

By Sunday I was overwhelmed. Everything hurt, every movement was laborious, and any sound above a medium hum felt like a knife through my ear. Just taking a deep breath was hard. Tears poured down my face and I couldn’t say why exactly, except that my thoughts were racing and I felt like I was sinking. My emotions often get erratic during a crash for some reason. I think parts of my brain get overwhelmed. It felt like synapses were firing at rapid rates but were incomplete. Thoughts would come fast but unfinished. I could barely talk straight. I didn’t know what I needed, but I needed help. Enter my mom.

Through the tears I tell her I think I need to eat. OK, she says, and just her voice begins to calm everything down. One thing at a time, she says. Start with the apple. I try to let go and redirect my focus on what’s in front of me: an apple on a plate with almond butter. All I have to do is eat it. I can do that. Cool. The tears come and go. I tell her I’m afraid and my health feels out of control. She listens and validates my discouragement, but doesn’t let me wallow too long into despair. Ever so gently she leads me out of the dark of my own mind and encourages me to keep going. I find myself clinging to those words, scribbling them on paper and my dry erase board. So I try, even though my insides are yelling Stop. Press restart. We’ve got a faulty body here. I sleep at their house on the couch because I’m too exhausted to walk back to mine. I’m thirty years old and my mom ‘tucked me in.’ It’s official: I’m growing up in reverse. Monty sleeps on the love seat next to me. The next day is still sick, but somehow better. I don’t feel buried by it now. My mom has worked her magic again.

The illness continues to teach me humility and gratitude. To find grace through the crappiest of times. It’s still difficult to admit when I need help, but I do. And I’m lucky to have people who provide it. My step-dad bought me groceries, and threw the stick for Monty when I wasn’t able to. I get emails from people who are sick with this and other chronic illnesses but their families don’t believe them or don’t understand, and they’re left to fight it on their own. Reading it is heartbreaking. I don’t know how anyone could survive this illness alone. Some of them say the blog has helped their families understand what they’re going through, and I always told myself if this even helped one person, it was worth the work. I hope I can do more. I wish I could make them know they’re not alone, or crazy, or inferior; all things you feel when you’re sick this way. I know we’re strangers, but we’re human beings and sharing something similar, so if you’re reading this, you’re not alone brother! But sometimes it feels that way and life gets heavy. I get it.

I am trying to be careful about my writing. I always hesitate when sharing an account like this because I don’t want to get stuck in a narrative of how hard life is without going further. Life is hard, but people don’t need that reminder. Life is harder when you stop at the pain. I try to look at the pain as the beginning of something better, not an end. Because life is also amazing, even in times of turmoil, but you have to dig deep, past the muck. It’s so basic, so cliché, but I have to examine both sides or I’ll turn into a blogging version of that Kathy cartoon. Oh God, the horror. It’s a fragile dichotomy, writing this blog. Half of me is sharing what feels like death, but the other half is screaming I’m OK! Everything is fine! Because I am OK. I’m here in my favorite V-neck shirt writing at my desk. But the schism is there and I have to be conscious of both sides. Writing isn’t a way out of it, it’s just a better way through it, if I do it right. I write better when I get creative with my circumstances, until I eventually outgrow them. Otherwise the conditions take over and despair takes the wheel. And that’s a lot of what this whole project is about; becoming more than a person to whom things happen. The poet/writer Paulo Coelho wrote this in The Alchemist,

“We warriors of light must be prepared to have patience in difficult times and to know the Universe is conspiring in our favor, even though we may not understand how.”

I love this idea and believe it wholly. A lot of things are at work that we don’t always have access to. It’s just easy to forget when shit hits the fan. Well here’s our reminder.

In other news, it finally happened: I dropped my phone in the pool. Idiot! I watched it fall in slow motion, with that split second of heat on your neck where you think you can reverse time and take it back, but you blink and there it is; Submerged. It’s now drying out in a ziplock bag with rice, so I’m off the grid! I’ll try to use the 48 hours wisely. I’ll keep resting and reading and writing. And hopefully by Christmas I’ll be better and I’ll have found the answer to life. Seems doable.

Anyway, this post is for my mom, who dug me out of the depths once again. She is my mentor and not only guides me out of the darkness but nudges me to be better, to grow stronger from struggle and not be defeated by it. It’s true, if I weren’t sick we wouldn’t be living so close, and I would’ve missed out on a lot of important wisdom that I’ll keep forever. All for free! Thank you for carrying me when I need it but also challenging me to become more than what’s happened. You’re a master and it’s made all the difference.

I’ve just made it home. My suitcase is still lying in the center of the kitchen floor.

It’s crazy how good home feels after you’ve been away from it, even when you’ve completely enjoyed your time away. Somewhere between waiting in line barefoot among rookie fliers who somehow forgot about the jug of water in their carry-on and the captain shouting God knows what into that fuzzy speaker, I start to feel my humanity slip like some kind of sock with lazy elastic hovering at the ankle.

Once upon a time, flying made me feel like a celebrity. The whole experience was a novelty and a privilege. And somewhere in my jaded depths I know that it still is. The mere idea of humans taking flight on a bus in mid-air is still mesmerizing and I’m lucky to have access to it. And yet somehow, the only celebrity I ever feel like is Ben Stiller in Meet the Parents. I’m all eye rolls and discouraged sighs, which sometimes emerge as a laugh–the kind of laugh you let out when nothing is actually funny. I try to keep my moans of discontent in, even when the automatic toilet flushes while I’m still on it and I’m sprinkled with fresh public toilet water. I try to breathe through the frustration of then not getting that same toilet to flush when I actually want it to and there I am dancing like some kind of monkey on fire trying to activate the motion detector that says just wave your hand to activate. It lies. I exit, I don’t care. I hate the toilet now. All I want to do is wash the Ebola off my hands and possible STD’s off my thighs, but the faucet requires the motion. And the soap requires a motion. And the dryer requires a motion.And what happened to handles? If I went on Shark Tank I’d reintroduce handles to public bathrooms. Anyway there is more dancing. More erratic behavior from inanimate objects. More laughing when it’s not funny. It’s like the DMV in there; the threat level of a Stage 5 freakout is just one toilet flush away in any given stall. You can sense it.

But not everyone confronts the airport bathroom circus. The old lady next to me doesn’t seem to have problems with her soap. I bet she’s been spared from the toilet water too. What is your secret, old white lady in the brown velour pant suit? What am I doing wrong? But there’s no time for philosophizing, I have to get to my gate. Guess where my gate is? Guess if it’s nearby or at the very far edge of the airport as in it has a separate zip code and everything. Guess.

Is it the tragedy that is modern American air travel that makes home feel this good? Maybe. Probably. I guess this account of flying would suggest I’m a young, old curmudgeon who has lost sight to how lucky I am. But it’s always temporary. I am either going somewhere great or coming home to relief and love, and it’s just the in-between antics that can get a girl down. Once home nobody shouts the temperature and the toilets flush WHEN YOU WANT THEM TO. Of course, an 80 pound furry beast running around you in circles then through your legs and back, shoving every toy in the box in your lap and wagging his tail with enough vigor to knock over small children and feeble adults, well, that helps too. That’s the best.

I celebrated Thanksgiving with my best friend big brother Nick and Company in Miami for a week. Mostly I felt like death, but I was excited to go and the change in scenery did me good. It’s been a rocky few months. My health declined from mediocre to poor without discernible reason, and that’s just the name of the game with illness like this. I can’t pretend I’m not discouraged by it or tired of feeling really shitty when I didn’t overdo it or change anything, as if a person deserves bad health anyway, but I’m trying not to wallow in it either. I saw the specialist in Miami and there are a few changes we are making, but we won’t know more until the results arrive from the copious amount of blood I gave to test. Aside from that, my progressive boyfriend and I broke up. Ew, breakups.

It’s interesting that a decision you’re sure of it’s the right one to make can be just as painful as the wrong ones you’ve made when you didn’t know any better. And by interesting I mean shitty. We did the adult thing and “called it” at the appropriate time. We saved ourselves the tragedy of letting it slowly burn and die until it ended in hatred. I guess ultimately, even an amicable breakup is still a breakup. It’s an end. You grieve for them and you grieve for who you were with them. I experienced a whole new pain this time around that stemmed from not being my whole self in the endeavor. I pretended and concealed when the truth was ugly or getting a less than desirable response. I don’t think Id ever done that In a relationship before, but I’ve never been under the circumstances I am now and had to introduce someone knew to a world that took so much explaining, and defending in some cases.

It’s weird, I actually wanted to keep my illness out of the whole thing. (I wanted to live in Neverland, is how that sentence should read.) I had this fear it would interfere with things before they ever had a shot to develop. I feared it would be difficult and unbecoming; It would suggest I was someone inferior. I was even afraid it might be the demise of the relationship. And then, it kind of was. The weight of it became too heavy, it’s unrelenting nature became too repetitive and it’s lack of a solution wore out the seams and we broke. There were other reasons, of course. But my being sick was up there, it messed with things, it was a big a part of the end. And for a while that was a really crushing thought. It made me feel small, made my life feel lesser. I push and work to live my life in spite of this invisible force trying to take it away, and yet sometimes, it still comes out on top. It wins.

But hiding it was like doing a monkey dance in a cramped bathroom stall. (Kind of) It was stupid on top of exhausting, and I don’t know how I expected anything authentically good to emerge when I wasn’t being true to myself. I am not my illness, I know that. But it’s there, it’s changed virtually everything in my life the last four years, and nothing good has ever come from denying or dismissing it; from pretending it’s not there. And yet, sometimes I can sense that people want me to pretend it’s not there. They want to hear that I’m better, and no one understands that fantasy more than me. But pretending makes me feel like I have to hide a part of my life that I can’t control, and that’s not a healthy place to be. I don’t want long conversations about my illness. Ive had enough of them for 20 lifetimes. But I do need an honest atmosphere that doesn’t require apology. I need to be able to be sick when I’m sick and well when I’m well and not judged inbetween. It will always take patience, compassion and effort in order for my life to be understood and loved from the outside. It will always be hard in my relationships. But hopefully if I am really seen, my external circumstances won’t take up so much space. And that was half the problem, I never really felt seen. Instead I felt sorry, and that’s because I betrayed myself. By not putting it all out there, I made it nearly impossible for my life to make sense. I am not jobless and living in my parents pool house writing on a blog called Twenty Five Pills a Day because of lifestyle choices. And that’s an attitude I confront a lot. I’ll work like hell my whole life to turn lemons into lemonade, but I didn’t pick the lemons, so I don’t think I need to apologize for that anymore. The weird thing is that in glossing over and skirting around this small part of me, so much more of who I am was stifled. Good parts! Fun parts! It doesn’t feel good not to bring your whole self to a party. In fact, that hurt the worst, and I did it to myself. I had a need that wasn’t getting met, and instead of accepting that once I knew it was true, I tried to do away with the need. Surprise surprise, that didn’t work. It’s OK to have needs. Love enjoys needs.

Now I am Stella getting my groove back. I see my health in the distance: a ship in flames slowly sinking into the ocean. Haha. That image makes me laugh. But this will pass. I’ll get better. Or I’ll get worse, then I’ll get better. It doesn’t matter, because I’m going to keep trying. I’ll attempt to transform all of this– pain, pleasure, toilet water– into something useful. Something fun. Because despair is boring and I’m seeking a creative life. The world doesn’t need more sad stories so I will find the good ones. I’ll trust what I’ve been given and let it fuel all my endeavors. Mostly I’ll breathe easier because I am who I am and I’ve made it home. I’m back. And I have so much to do.

I write this from the floor. My knees are scrunched up in front of me and my caps serve as wrist stands. I’d write at my desk–it’s literally called a writing desk–but I can’t sit there long before my neck goes out which causes a headache which causes a sad face. Like this :( That’s exactly how I look when I’m feeling bad, if you were wondering.

Today I woke up feeling rough. Rougher than usual. Still, this is nothing new, and I’ve learned how to let go of plans and make myself useful in other ways from bed. But I was impatient today. I had things on the to-do list that I wanted to tackle and I couldn’t. I confront this a lot, but today it made me mad.

I’ve been trying to make some changes in my life: health-wise and beyond. I’ve been proactive about eating better and since some recent lab work detected gluten anti-bodies in my gut, I’ve cut that out. I don’t miss it that much, in fact it’s high time to go without it. Gluten free is so trendy right now! It’s just that I’ve never liked when people are picky at restaurants. And now I’m that girl, ordering the burger without the bun and asking the ingredients of sauces. Oh well.

Besides the diet, which I’m still configuring, I’ve begun organizing closets and getting rid of excess anything and attempting to follow some type of schedule. There’s catharsis in things like this, but they can prove to be difficult and today is the perfect example of why.

Yesterday I cleaned out this closet in the living room, which has somehow collected my nieces baby clothes, my ex-boyfriends computer, a guitar with a missing string, and THREE brooms among other miscellaneous clutter. Throwing junk away can be a holy experience, and I was beaming throwing excesses out. After that I went to the bookstore to check out a few recommendations from a friend. I found them and then walked around a while. I like the atmosphere there and the quiet way people speak. Then I went to the grocery store for a few things that turned out to be a lot of things. My legs were burning by the time I got home and I knew I’d probably overdone it. (Wuss) But I was in my Martha Stewart zone, or something. When I began to put away groceries I noticed that the fridge could use some cleaning. I took everything out, pitched half of it, washed the drawers in the hot soapy water, wiped everything down well, then stocked it. Admittedly I sat there and opened and closed the door a few times just to relive the magic of my newly pristine fridge. I was done around 10:30.

The truth is I didn’t do that much. And that’s the ticket! You don’t have to do that much in order to feel this bad the next morning. It feels like you ran a marathon on a whim and at the end a bunch of people gathered around and kicked you for no reason. Dicks. When I sat down I realized my whole body hurt and my mild migraine I had all day had turned into a full-blown one. I took some of my 25 pills, then my nighttime pills, read a little and went to sleep. I slept pretty rough, but nothing too out of the ordinary.

When I awoke the next morning to the pool guy knocking on the glass door I felt the way Gary Busey looks.

Good Morning!

I could barely get my eyes to open fully by the time I got to the door. I’m sure I looked like a zombie in pink pajamas. Anyway, all the “overdid it” symptoms were back. Achy, dizzy, heavy and the worst of them all: weakness. Because there’s nothing to do for that except wait it out. And that’s especially hard to do when looking at the list I’d optimistically made yesterday of all these tasks that needed crossing off. I really wanted to clean out my clothing closet, and sort through medical bills. You know, fun stuff! They would have to wait.

The thing is, it’s OK. This is how the illness works and I overdid it, just as I’ve done hundreds of times before. I’ve learned plenty of ways to make the day count from the couch. I’ll rest and improve over the next few days and remember that compared to the past, this is truly small potatoes. I don’t write the details of my day to whine or seek pity, but to show what a huge disruption the illness can be. It feels like I am always playing catch up with the rest of the world, and this is probably why. I just tried to plan two days and it went off track. There is such a huge variable to consider and it’s often anyones guess, so sticking to things is a guessing game. Beyond that, I write because I’m still trying to figure out how to do this. How to have a fulfilling life, one that I am proud of, without upsetting the sleeping sick dragon inside me. It feels like a continual conundrum, and maybe it always will be.

Life keeps changing and I constantly have to re-mold how to live it. I am in a new relationship which is great. But it’s also a new challenge. Introducing him into my weird sick life has been difficult on both ends. The illness is confusing, my life lacks structure and the circumstances just aren’t normal. I forget that my life requires explanation, even defense sometimes. In the beginning, I loved the escape I felt meeting someone new who didn’t know me as a sick person. It’s like visiting a place you’ve never been before and feeling like you can be anyone because no one knows your past. I thought we could keep going without having to confront it seriously. That was stupid. But it felt good to me, good I hadn’t felt in a while, and I went with it. Obviously that approach dissolved and at some point we both had to face the music.

I don’t always consider that to outsiders, my life isn’t normal. I forget that most people aren’t sick. They don’t have to take a bunch of pills in order for their bodies to do what they’re supposed to. They can go to work, attend social outings, fall asleep on their own at night, and wake up and do it again. Something I did once but now I am in awe of. I forget that being sick effects other people, not just me. I realized that being continuously ill and taking pills all the time can make other people uncomfortable. But the truth is it does, and that’s OK too.

I think the hard part for partners of sick people is that they feel helpless. They are constantly reminded that we’re sick, but there’s not a lot they can do, or say, that will make it better. And that can wear on a person, as much as it wears on us to be sick. In my case, the healing doesn’t come from words. Nothing they can say will fix it. It’s more a matter of being there– sometimes a hug, holding my hand, or just laying together, feeling the warmth of someone else’s humanness, and yelling LIFE IS HARD BUT IT’S OK! Figuring it out and adapting to what life with chronic illness means isn’t very easy, but it continues to provide me a lesson in surrender, for those around me, too. Sitting with the pain and accepting circumstance and just allowing the moment.

I think the thing to remember is that even though illness interrupts plans and SQUASHES OUR FUN SOMETIMES, it really can’t take away the ethereal, elusive thing that makes each of us specifically human. We are still who we are underneath all that moaning (I find I sigh a lot) and illness can’t touch that. In fact I think if we try really hard and lean in deep to our experience, we’ll find it can make us an even better version of ourselves. I forget it sometimes during dark days, but somewhere in my depths I know it to be true.

Health-wise I’ve been up and down, but more ups I think. I’ve been out of the house doing things; normal people things, 29-year-old things. Living like a normal person doesn’t always fair well on my body and a few times I pushed it too far and paid the price, but somehow it felt worth it. My soul needed to get out in the world and roll around in the dirt. I felt like Monty when he sees a squirrel and I unhook the leash–caution to the wind, full force ahead. Maybe 50%. I’m often battling this fear that if I’m sick for too long I’ll go to sleep one night and when I wake up thirty years will have gone by and I’ll have barely moved. It’s not always easy but I know it’s important for my soul and my psyche to get out there and try a little. So I do. I did. And I experienced these moments where I felt so intensely alive I could feel it buzzing in my fingertips. And that’s the stuff of life people! The best kind of little reminders.

A while ago I was invited by a friend to attend a three-day meditation retreat in Magnolia, Mississippi. I’d never been on a retreat before and I felt apprehensive at first. For starters, I felt angst about whether my body would hold up through the weekend. Secondly, I had this cliché vision of long-haired hippies dancing naked around a fire, sharing their “truths” or something. But when I learned it was a silent retreat, I knew I had to do it. I don’t know if I’ve made this apparent, but I sort of hate meeting people. I cringe at smalltalk and I find strangers questions difficult and exhausting to answer. I know it’s just part of conventional social norms, but this question of “What do you do?” causes me an intense five-second panic attack, and introductions almost always go there. To give an honest answer comes with this pressure to provide a back-story, which is long and convoluted. I expect strangers have as much interest in hearing these details as I do telling them, and sometimes I feel like rolling my eyes at my own reality. But I haven’t yet figured out a way to give a succinct honest answer that leaves everybody comfortable. I think I’ll start answering ‘waitress’ and save everyone five whole minutes.

So this the idea that we wouldn’t have to talk to other people, including our assigned roommates, totally sold me. But I still felt angst about my health hovering in the background. This is nothing new. I confront this fear all the time making decisions because my health has failed me so many times before when I’ve really counted on it. So I don’t anymore. It’s hard always having to maneuver around this invisible thing in your life that you don’t even like. But this is my reality and hating or fearing it does me no good. So I considered the worse-case scenario; I crash. Even if that were the case and I spent the weekend in bed, what were they going to do? Strap me to a chair and force me to meditate? I figured I’d be OK. So I said yes. And there’s something pretty revitalizing about saying yes to something new, especially when for so long these kinds of opportunities were an automatic no.

I wrote an essay about the weekend and I’ll post that next. I’ll say now my favorite part was eating lunch next to my friend in total silence, only making eye contact every now and then. There’s a lot of space and freedom that opens up when no one feels the need to talk. They call it “noble silence” and I think we could all use a little more of it. It rocked!

After that I was invited on a weekend trip to the beach where I would share a house with 12 other girls. So basically the opposite of the silent retreat. I am a total beach bum and don’t feel I get enough of it, so I went. And it turned out to be a really awesome and fun weekend. I was feeling pretty sick the day we left, but I was also really craving the sand and the air and warm gulf water. (I’m a pansy about water temp) I knew I’d feel better once I got there, so Emily and I drove the three and half hours there and watched the sun set while crossing the Louisiana/Mississippi border. I felt really happy in that moment. The sunset was the kind that changed colors every 10 seconds and was remarkably beautiful over the Louisiana marsh. I tried to capture the spectacle made by all the intense colors, but a picture never does a great sunset justice. It’s like holding a rookie drawing next to a Monet. Maybe it’s better to just pause and enjoy the splendor of a disappearing sun. It’s such a short-lived pleasure anyway. Watching them always make me feel grateful. We finally arrived and learned that our house was next door to the classiest bar in the South: Florabama. So naturally, we went. Never heard of it? Here’s a peek.

No Pets…

Every time I visit this bar I am overwhelmed and baffled by it. It’s three stories (possibly more, I don’t know, I’ve gotten lost in it twice), hosts multiple bands on different levels, and is jam-packed with drunk people of every age. Every surface is a proverbial guest book where people under the influence leave their mark for the world to see. I’m always riveted and only sometimes horrified reading the graffiti that adorns literally every surface. I started photographing the funny ones so I could laugh later and have some weird photographic keepsake of the trip. So I took a photo of the surface of the bar we were ordering from.

Damn you, Laken

We couldn’t stop laughing at the idea of some angry person pulling out a marker and deciding to write that Laken Franks sucks Donkey Penis. A while later I entered the Florabama bathroom, where I confronted many, so many more messages, in every color, on every surface, including the toilet seat. I took some more photos because so far no one I met was as interesting as this graffiti of the world. I liked the idea of one picture having the mark of so many strangers, many of whom likely have no memory of the literary gems they left. And now I’d have a piece of it and they’d have no idea about that, either. So what did I find while looking through those photos later? Another sentiment for Laken in the bathroom stall.

Damn you again Laken

Only this time Laken’s a baby murdering whore. I couldn’t believe the name showed up in two photos. Pretty crazy odds given the volume of surface area in that place and the amount of angry messages. I wonder who Laken Franks is and what she (he?) did that left someone upset enough to get creative with their insults and tattoo them on two of the walls of the worlds classiest bar. I shall never know. I’m just glad I was alive enough to be there and capture it. My fingertips were buzzing at little moments like this all weekend. But mostly when I watched the sun rise on the beach at 6 am. There’s something almost holy about a sunrise. It feels like a sneak-peek at reality unfolding–a backstage pass to the universe or something. Anyway, I’ll leave you with that photo, because I was feeling very alive when I took it, and my fingertips still buzz when I look it now. Maybe yours will too.

I’m never up at this hour. But at roughly 6:40 am as I drove across Lake Ponchartrain, one of only a few lonely cars on the 24 mile bridge, it struck me just how sacred the early mornings are. Of course over water, there are no distinct markers of distance traveled besides mile markers on land, but somehow over uninterrupted waves there were these distinct and momentary glimpses into the context of my life where all the working pieces fit together. The sense, however fleeting, had me second guessing my entire history as a bona-fide night person. Maybe there’s something to these early morning hours where people are drifting into the routine of their day or into the hangover of their night, and in the middle is me, not exactly doing either, but finding my place still–stumbling on a whole in lieu of constant and incompatible parts.

Yesterday I attended JazzFest and I remember walking around in no known direction, attempting to find a group of my friends, which is almost a miracle if achieved in such a clusterfuck of a public arena, and this thought kept trying to get a hold of me. “What am I doing? I have no business being here.” Over and over that thought, with every wrong turn and mistaken identity. What a sad thought! I couldn’t pinpoint the origin of it, but it probably had roots in my mostly confined and solitary past over a few years. And now sticking my head out, landing clumsily in the middle of the public world that not only didn’t stop while I was “out sick”, it also didn’t slow down at all either. And that continued, irreverent, incessant flow of time in one direction only all of the sudden felt very real and a little unnerving too. But I walked on. It’d be a lie to say I felt any confidence at all then, taking in every type of person of every age and origin.And even though none of them looked truly happy to me, none of them had a life that I felt cheated by not having, I was still odd man out. I started to wonder if I had real friends at all that I’d find. Maybe I had imagined them up in a fantasy of my mind, and I’d walk tirelessly never bumping into them because there was no them to bump into. But I walked on. I pretended some of those thoughts didn’t exist. Maybe more, I just didn’t take them very seriously. I’d feel the sun burning my shoulders and I’d affirm that more likely than not I’d find my friends, I’d engage in young adult behavior, and feel a little better about my place in reality.

After 45 minutes of circles and flags and strangers, I watched a really drunk boy hoisted up by his friends, being dragged with his lifeless converse trailing under him leaving shallow lines in the dirt, the unfamiliar sights were piling up, and even I started to feel like a stranger there. But then– something familiar. Emily’s ponytail. Someone. People. Friends. They existed, and I was not yet proven insane. In that moment those thoughts I had didn’t carry any weight at all. Whether I found my friends or not had nothing to do with belonging in all honesty. Separateness is just a construct of ego and I know that, but it can stab you anyway. I knew that afternoon I could’ve really used some friends. And there they were and there I was. I belonged. I knew those thoughts were shit. Time to keep on living. Time to have fun now. Time to participate in the onward direction of time, and attach to some other thought that experience will most likely prove wrong.

Maybe I should’ve mentioned it earlier, but I’ve never really been a live music person. Which makes me feel incredibly lame mostly. Just like I’m also not really into The Lord of the Rings. True “outsider” feelings emerge in me when this is brought up in public, and I feel like there’s some joke I’m just not getting. What is there to say about it? To each his own. Anyway, at every live music event I’ve attended, I find myself gazing off lost in observational mode of the people enjoying the music, instead of intrinsically enjoying the music myself. I can’t help it. There’s always some woman on the borderline of being “too old to be there” on some drug that’s a little too young for her to be doing, and I can’t help but watch her, dance carelessly, body parts hanging out, not giving a shit about what etiquette she’s breaking. Then I at once sympathize for her but also want to be her, because she is losing herself in something enjoyable, and she’s alone, and I’m the creeper at the concert not dancing but staring wide-eyed and blinking very slowly. I dated one of those music junkie type of guys for two years. He had an impressive collection of bands that you never heard of on his ipod and was always discovering music years before it became popular. (I on the other hand got my music from Apple Product commercials) He flew all over the country to catch his favorite bands at different venues. Sometimes with friends and sometimes alone and it was this small gap between us because this passion he fell off his seat for was somewhere that I just didn’t fit. And this schism in us always interested me, because at concerts we’d share a joint and then even more I’d separate from the setting and lose myself in the detach-and-detect humanity mode. He was good about keeping me down to earth and assuring me that dancing like an idiot was fine and encouraged, and that no, that guy next to me was not about to die from sensory overload regardless of what his face and body movements suggested. But there was always some wall with me at those shindigs. I could never really figure it out. Ultimately the relationship ended, and I wondered how much, if any, this disconnect had to do with it. Maybe nothing at all. Maybe a whole lot.

It’s funny how discovering clarity leaves with you so much to know still. My goal this year has been to find clarity of any kind, certainty of any measure. Because both of these things lack hugely in my personal life and it wares on me daily. It’d be nice to make a decision and know it to be right, or know anything at all for that matter and trust it to be true. But even with this goal in the forefront of my consciousness, it has still been incredibly hard, and so far, I’m yet to find either. I’m guessing the more things I pursue where the end is uncertain and there are no guarantees will help me to eventually get there, or in the general ball park. On the bridge this morning, the unceasing rhythm of a road bump every 1.5 seconds, I glimpsed certainty. I glimpsed knowing something at all, and it felt very good. But I don’t know if it’s possible to exist in this dimension full-time. At least half of life seems to rely on not knowing but jumping off anyway. Maybe love, happiness, success, peace..are all the outcomes of great risk and great faith. All anyone can do is make their best bet and go for it. Maybe once we let go of knowing anything for sure, the way I walked in endless circles yesterday, the way those waves went in no direction this morning, is how we find the happy end, whether we knew we would or could or not.

Do you ever go through something that is both presumably necessary but incredibly hard and subsequently feel the weight of the world baring down on you as if the gravitational pull changed and it was all on account of you doing something possibly stupid but possibly necessary? Me either, life is easy and fun!

While my health has to continued to sustain for reasons I can’t entirely know for sure, I’ve had some personal experiences which are difficult and painful and every time these things wash over me I examine why life has to be hard (as if I actually expected it to only be easy) and then I wonder does life actually have to be this hard or am I just doing it wrong? I don’t know the answer to that one. I guess we can only learn as we go. I find myself telling Monty to never fall in love because it leaves a mark on every part of your life and ultimately it changes you, whether you wanted to or not. But then I watched the neighbor dog humping his owners leg and considered that obviously the alternative isn’t so much more grand. Though there’s an appeal to that leg–it’s not going to keep you up at night with heartache and strife. Or maybe I’m too quickly assuming here, maybe I should ask the dog.

Yeeeeah Legs!

Of course this fantasy that life would be easier and less painful without this or that is just that: a fantasy, a slight rejection of reality. But maybe more detrimentally, it presumes that somehow as humans we know better, and we know the answer to what would make life easier or more tolerable. As if life isn’t some ridiculous, complex mystery that has an infinite amount of working parts we as finite humans can only momentarily grasp, if ever at all. And I’m not struggling with an idea that every human for thousands of years hasn’t experienced pain from and questioned the value of. We’ve all been through it. Wondered if the pain in the end was worth the utopia in the beginning. I like this quote about it: “Love is the voice under all silences, the hope which has no opposite in fear.” by e.e. cummings. Would I really choose an option where falling in love wasn’t part of the equation? Duh, no. That’d be insane and cowardly and boring. Love is a remarkable gift, with perhaps its best quality being that of illumination. I like how sometimes it picks us, even when we’ve turned our backs on it or given up on the idea. I like that it takes us places we wouldn’t go on our own. I like that it makes even a worn-down curmudgeon feel giddy and silly and do things he thought he’d never do. I’m thinking of my grandma now, who at 86, has a man named Harold (a few years her senior) who is madly in love with her. I saw it with my own eyes. They would marry if only she’d accept.

Harold had been living at her facility for a few years when she moved in. He has a military haircut I imagine he’s had for 50 years. He speaks concisely and says what he means. There is density to both his physique and his words but a subtle softness you pick up on behind it. Harold had been sitting at the same table in the cafeteria for years, often alone, seeming annoyed by even the thought of socializing and especially at watching others partake in it. Sometimes he looks like he wants to press mute or fast forward on the whole charade; a sentiment I’m familiar with. He eats and drinks the same thing at his meals every day in a very particular order–part of the routine involving peeling his fruit and sharing half of it with my grandma. The ending involves hot tea with a lemon at a very high temperature that if not fulfilled, as sometimes happens with new employees or forgetful old ones, gets sent back. He waits. Sometimes he scoffs, others he sits in silence. I ate with them a few times last summer and couldn’t help but think of Jack Nicholson ala As Good As It Gets, with a little less show but just as much intensity.

Harold would be the last guy you’d expect to get all doughy-eyed and follow a girl around like a love-sick puppy. And yet, here he is. Three years in to my grandma’s stay at The Atrium, Grand Junction’s finest assisted living home, and Harold has fallen over in love with her. I’d like to say I’m exaggerating for literary purpose but truly I am not. I saw it with my own eyes. It started as a joke in the family– OOooooh Grandma! Hanging out with Harold again?! Grandma has a boyfriend! Hehehehe! And then slowly it was revealed to all of us that for him it wasn’t some crush, he’d truly fallen for her. He switched tables to sit with her. Even thought that meant there’d be a certain amount of socializing. He comes over all the time to watch Westerns at her apartment. He on the couch, she on the recliner. Of course half the time they fall asleep 10 minutes in, but no matter. The man has it bad. And something about it completely excites and inspires me. It turned the tables on rules I had stupidly self-made on love and life and age. Very stupidly. I am constantly discovering how much I don’t know. But I love this story. I love that the employees there asked my grandma what she had done to Harold. What happened to the old crotchety man rolling his eyes in the corner? Now he was partaking in group activities? Calling her on the phone? Feeding the ducks? Switching tables?!! While my grandma tries to insist they’re only friends, (oh my God life never changes) and that she finished that phase of her life after my grandpa died, it’s clear she’s enjoying the time with him as she should. Albeit rejecting his proposals and insisting he partake in more bridge games. I love it all. They’re is something truly hopeful in all of it. Anything that flips our predefined notions on their head can only be a good. It’s illuminating. I imagine it’s that way for Harold, too.

Harold, My Grandma, and her best friend Myrtle, playing cards on a wild Friday night last summer.

Maybe it’s different for her. She clearly likes him being her friend and enjoys the companionship. Perhaps in this last stage of their lives, my grandma’s old stoic German ways will prevail and she’ll reject the romantic advances and they truly will be just friends. At 90. And that’s fine too. Of course I’m secretly hoping that one day she’ll weaken, she’ll let him sneak a kiss. Maybe she already has. I don’t know. But watching this all unfold fills my heart up with something good. Something hopeful. My grandma’s advice to me has always been that boys like girls who are mean to them; that she hardly ever let a boy get too close or too much from her. To work on your own life and don’t design it around some boy. And I knew as a young woman she had a lot of interested suitors and broke her share of hearts. In fact she pushed her first boyfriend into a ditch when he tried to kiss her, which she said of course, only made him try harder. And that’s been her advice to me; to push the boys into the ditch and watch what happens. Honestly I take her advice to heart. I love listening to her old stories. Her simplicity about life. She is a very happy person who loves her life, and so for me her advice carries a lot of water. I know they don’t have the internet at the Atrium, but Grandma, if you’re reading, give Harold a kiss for me. (I mean you can’t push the man into the ditch–he’s 90!!) For whatever reason watching the two of you, and specifically him, has been a very good thing for me, and I’ll probably always carry it with me.

Two things happen when I start feeling better: My house gets really, down-to-the-baseboards clean, and my writing takes a hiatus.

For whatever reason, the last two weeks have been comparatively healthy ones. My energy is up and my pain level medium and manageable. Like most people with the illness, I couldn’t tell you exactly what’s changed. And if the past is any indicator, I could just as easily land on my ass tomorrow and be in a bed for a week. Of course, I’m not expecting that, and I’m enjoying the hell out of the newfound energy. My mom says it’s obvious when you start feeling better because suddenly you see all these little things that need tending too that you hadn’t noticed before. I’m sure it’s a defense mechanism of the body. You can’t exactly worry about dusty baseboards when your arms are too weak for teeth-brushing.

As I’ve enjoyed this accelerated momentum and stamina, I noticed I was forgetting to write. It’s easy to see why–often the trigger for me to write is either some sort of pain (physical or mental) that leads to enlightenment or offers some lesson, or it’s diverted attention to some very small detail that I usually notice when the pace of my life is slow, ie when I’m sick. It’s not that the requirement for noticing these deeper observations is sickness, it’s that when I am in fact sick, everything slows down. Out of necessity, I don’t really have a choice. The tasks on a to-do list, the chores, the logistics of physical life are put on hold while whatever broken part of me is on the mend. When I’m in this state, it’s almost as if some parts of my brain are turned up while others turn down. Like the static and noise of everyday life are quieted, and in that absence come the more powerful details and ideas. In other words, I’m tuned in to a different frequency. I’m looking for and sometimes finding answers and meaning maybe because it’s a way to feel alive and happy while waiting on my physical body to “catch up”. But I’ve discovered something in the last two weeks that now I’ll be paying attention to:

I shouldn’t have to be sick in order to be tuned in to that frequency.

The modern world is fast. The to-do lists are bottomless. And even when we die there will be unread emails in our in-boxes. This is why that conscious awareness I have while I am sick, the kind that the mystics speak of, will have to be a choice on my part. (If I am to be well) If the last three years have shown me anything, it’s been the importance of that tuned in consciousness. Of living my life awake, not numbed or on autopilot. These things are easy to forget. Hell, I’ve been healthy a week and half and seemed to have forgotten just as quickly. But it certainly makes me examine the thought that all sick people have– could this be the reason I was sick at all? It’s not a theory anymore, I know with absolute certainty that without illness me and my life would be very, very different. I was a type-A personality; A competitive gymnast to whom school and other things came easy. Would I have ever slowed down? Would I ever have found Wisdom in the Day Lillies or saved the all those baby frogs from the pool everyday while examining the largeness and smallness of life that surrounds me? Would I stop to photograph plants like this just because it struck me as beautiful and that was reason enough for pause?

The Pink!

Well, probably not. And it’s not to say that me noticing the beauty of flowers or the fragility of life is so important or better than what I’d be doing otherwise. But I have to trust in the specific experience I’m having. Things could have been different, but of course, we can’t re-write our pasts. I’ll never know who I would’ve been. On bad days (on unconscious moments) I fantasize that I would have been better. That my life would be a glamorous one and there would be little suffering and I would be the president blah blah blah. But that kind of thinking is mostly ego of course, and all fantasy. Projecting that all my happiness lies somewhere over there, if only things were different is textbook ego.And all that contributes to is a lack of attention to the present. It takes away my power and ability to see and navigate where I am with what I have. If our power is in the present and it’s indeed all we have like Tolle and his peers suggest, then the “if only” thought doesn’t get us very far. It’s rare that we stop to consider that without illness or without our painful experience, we might have been someone worse. Someone very unlike who we are today. Now when I consider why maybe this illness is a part of my path, it makes a little more sense. It’s what I needed to become awake. And clearly I’m still trying to get there.

Of course maybe you’re a student of the chaos theory, in which case all of this is just randomness unraveling in a one-time deal called life on earth. Some people are sick and other people aren’t. Life is good or life is bad and then you die. I’ve considered this hypothesis but it just doesn’t work for me. It doesn’t further my vision or deepen my understanding of life and its complexity. In fact it seems to cut off at the very best part–the why. That’s a question I wonder if I’ll ever stop asking. Most of this experience only begins to make sense when I get down to details like a scientist would, and so that’s where my understanding is. Or where it begins. I am still searching for more answers, for more mentors and schools of thought to point me toward them. But I find it hard to accept a conclusion that appears to stop at the tip of the iceberg in terms of depth and understanding of all the elements of life that we cannot see. Love. Suffering. Belief. Surrender. Grief. Grace. Of course maybe I’m wrong in which case we’re all going to die anyway and I’ll never see you again. So, ya know, whateva.

There was only one day in the last week where I felt bad enough to spend the afternoon horizontal. As I write that I’m containing my excitement at how “good” I’ve felt that only one day this week I was on supine. Anyway, that morning I’d caught the eye of a tree frog on my kitchen door. For whatever reason I watched him a while and then took a picture. On my downtime that afternoon I kept thinking of that frog and the surplus of details on his little tiny body. So I wrote- a poem- for the next two hours. I don’t know whether it was good or not and maybe that doesn’t matter. But I do know for whatever reason, it had me feeling good to write it. I noticed then too, I’ve got to slow down. Even when I feel good, let some tasks lie. Let some calls go unanswered. Sit in stillness and quiet and let the questions come. Even if for ten minutes, I always feel better. Lately I’ve caught myself stuck on the guide channel of my TV, incessantly searching for a show that I feel will entertain or gratify me. I play one show in the window but continue to seek the magic program, while ads about Lipitor blare at unconscionable volumes. Suddenly, I’ll hit the power button, and the subsequent silence feels so. incredibly. good. That was the program I was looking for; silence! Life is noisy, and fast, and always non-stop. Sometimes it’s OK to stop and do nothing. Notice what happens in the stillness. It’s as if a whole other world exists right beyond the busy.

This strange thing keeps happening. This clear salty liquid keeps filling up in my eyes and overflowing down my face. I’ll feel a little overwhelmed and then a sense of loss, like I’m mourning someone. The liquid is an endless spring. I imagine I’ll run out, but I don’t. I have to drink more just to supplement all that salt I’m losing! It’s pretty annoying. I’d like it to stop.

The truth is I become a fragile emotional feather when I’m sick without relief. Gradually, after day and night and day of unrelenting sickness, it just gets to you. It starts to feel like dying more than living. I know that’s a heavy statement, and I use the verb feel very specifically. I am very much alive. Although it does beg the question. At what point do we say someone is “dying?” When their suffering outweighs their relief? That’s another question another day. I am for whatever reason, very alive, although I feel very dead. But dead people don’t cry so I think I can rule that out.

The real reason it’s been so hard recently is that being sick is absolutely and utterly exhausting. It’s overwhelming. And you know what I fantasize about? Being one of the people in my life right now that gets to offer help and suggest improvements and do random kind things. I dream of just being an average person in the functioning world. If you are that person, in anyones life, treasure it. It’s truly a privilege to be able to give to others. I might not have understood that had I never gotten sick. I want to give instead of take take take all the time. I’m tired of relying on help from others and constantly showing gratitude or kissing ass because I’m often helpless, unreliable, or burdensome. I’m tired of being high maintenance. I’m tired of all the pills I take, that work about half the time. Sometimes my stomach turns at the thought of them. I’m tired of being a bad friend in terms of what I am able to offer. I’m tired of what I am made to consider my “social life.” I’m tired of calling in sick to doctor appointments. Of seeing one or two hours of sunlight on bad days. I’m tired of my nightmares and high anxiety dreams every night. You’d think such a weighed down life would find respite in the dreamworld, but nope!! I’m tired of being 29 and relying on my parents as much as I do. Tired of feeling like I have things to offer the world but am too sick and small to carry them out. I couldn’t even hold a part-time job right now. And I’d actually love to. I’m tired of the answer being that there is no answer–there is no cure. I’m tired of being tired. And I know that those I rely on get tired of it too. The effects of all this go beyond me.

I don’t believe in whining and complaining and lamenting about life. Going on that way doesn’t really move us forward. But at the same time, there is pain here, underneath the pain, and if I don’t let it out I fear it will grow and take over my already sick insides. So I have to release it. I thought maybe if I write about it, these episodes of fluid filling up my eyes and clouding my vision and streaming down my face will cease. In other words, I want to stop crying at dog food commercials.

I am someone who loves solitude, thrives off of it even. But lately it feels more like loneliness, which is the third cousin twice removed from solitude. It’s a bad feeling. The difference between the two is that one is chosen and the other feels like the forced, only option. It’s hard to swallow when you’re constantly canceling on plans. And what you’re doing instead of being with friends, is being sick and alone at home. That’s not a fun thing to go through all the time. It wears on you.

I also laugh and cry at myself because I still want to see new places and try new things, meet new people and kiss cute boys. It’s like my heart doesn’t know I’m sick. It never gives up on the idea of new adventures. And then I wonder who would want to date me that has read this blog? I sort of leave my bleeding heart in the words here, and it’s a lot. It probably looks heavy. It can be, like anyones life. I feel vulnerable sometimes knowing that people have read such personal things about me without actually knowing me at all, but it’s part of the project. I told myself I’d always be honest, including when it got ugly. And I feel like it’d be dishonorable to discontinue that just for the sake of vanity. Still though, I worry and wonder if I’m cutting myself off from potential personal relationships by laying it all out there for the world to chew up. I worry where my life will go and how in Gods name I will move forward from here when some days I can’t leave the bed. But our boy Tolle is right: all we have is the present moment. All anyone can do is here and now. And if the present moment has me weak and in bed, (like it does right now) I can’t judge it or myself. This is where I am. I am doing what I’m capable of. Some days are going to look like this:

Not tired of this part.

I see where I’ve gone wrong. I’ve been judging the circumstances of my life which are beyond my control. I’ve been equating my broken body with who I am and my past as the teller of what my whole life will look like. Neither are true. But my circular thoughts would say otherwise, and sometimes we have to observe ourselves beyond our thoughts and feelings–as they are often flat-out wrong. At the same time, this life is just painful and hard sometimes, and I guess it’s OK to type that out loud. Just like I will type out loud when things change and life is better. Everything is temporary.

I also know that goals never hurt anybody. And I plan to make some more specific ones and at least feel like I am playing a part in my health and happiness. There are small things that I can do and/or avoid that can help. Well, that’s what my mom says, and she is usually right. She’s also planning to give up TV for Lent which sounds great to me. I have a few projects in mind in lieu of the crap we would’ve been watching. Creativity never hurt either. In fact, it’s often where we find relief we didn’t even know we needed.

Also, listen to this song. It’s called I Wanna Get Better by Bleachers and I know the title is almost annoyingly appropriate but it’s a really fun and happy jam. And you can’t have enough of those.

Going to the bookstore is one of my favorite mid-day activities. I’ve been under the weather lately so it was nice to get out and see real life. I felt like Bell from Beauty and the Beast in that library singing. Sadly there’s no ladders at Barnes and Noble but it was enjoyable nonetheless. I left with my next TEN books to submerge in for however long it takes. I’m watching ice-skating and that Olympic music they play when they cut to the commercials is so inspiring it makes me feel like I could become the president. Which is even more reason to read. So here’s the list! Cue the music.

1. Where’d You Go, Bernadette? -Maria Semple

I remember picking this book up and flipping through it at my last bookstore outing and for some reason didn’t end up buying it. When I spotted those big black fly-type eyes on the cover I grabbed it immediately before I could back out. Shameful fact: I really love this books cover and that played a big part. I know the cardinal rule, but it’s also sustained positive reviews for a very long while, and Jonathan Franzen loved it and so in the pile it went. Mostly though, I loved the cover.

Ding Ding

2. Dance Dance Dance -Haruki Murakami

So the Wind-Up Bird Chronicles was one of my favorite and most adventurous reads last year and discovering the many other “Masterpiece Novels” he’s authored I was way excited to dive into another one. I like that his books keep your imagination and consciousness running. I’ve got high hopes. I know it will be good.

I liked the title. And the subtitle. Also it was on the bargain rack. It’s probably stupid.

Ugh, birdshit

4.Oneness With All Life -Eckhart Tolle

This is a bite-sized version of A New Earth, which I’ve read and re-read and loved. But I forget the teachings often. I go back and reread passages that I’ve felt I’ve never read before. I think it’s one of those that stay on your bed stand for life and by the time you die the entire book is highlighted. Anyway this smaller dosed version is made of “inspirational selections” to be read maybe one or two pages per day and to reflect on. Think of it more as a daily meditation. Since it’s so easy to forget the big stuff, I like to have something in the morning or before sleep that gets my head right. It’ll go on the nightstand.

5. The Illuminaries -Eleanor Catton

Do you ever feel like the Universe is talking to you? Well this book came up three times in three days and I took it as a sign that I gotta get in on it. It’s also a gargantuan read (over 800 pages) so it will be my friend for a long time. Or enemy.

Also I have no idea what it’s about.

6. Proof of Heaven -Mary Curran Hackett

I’m unfamiliar with this author but crudely, I fell for the optimism implied in the title. Even though it’s a novel among hundreds of actual accounts of Heaven, the back summary drew me in as well as the first two pages and I was like “Cool, I’m IN!” and now that I’m reflecting on that I really hope I didn’t say it out loud because that happens sometimes. Anyway, this is not to be confused with Proof of Heaventhe memoir by a neurologist who died, went to heaven, and returned. I’ve heard really good things and watched his account in interviews. Pretty amazing stuff. That read is next in this Heavenly genre. (Mom, you said you have it. Give it to me!) But this one was on the bargain rack. Girls gotta eat.

7. Born Under a Lucky Moon -Dana Precious

Complete blind buy. Liked the cover. Like the summary. And the price. It’s Olympic Season so I’m really going for things.

8. The Almost Moon -Alice Sebold

Moons are so #trendy! I hadn’t heard of this one either but it was a #1 National Bestseller and the author also wrote The Lovely Bones which I read long ago and really loved. And it was on the bargain rack. OK you know what? I’ll just tell you when it wasn’t.

…

9. The Four Agreements -Don Miguel Ruiz

I have been hearing about this book for a long time now. It was published in 1997 but stayed on The New York Times Bestseller list for 7 years and sold 4 million copies. The premise of the book is simple but beautiful– in lieu of agreements and rigid beliefs we try to adhere to but often end up limiting our happiness, Ruiz suggests a personal code of conduct he calls The Four Agreements. Wanna hear em? Sure you do.

Be Impeccable With Your Word.

Don’t Take Anything Personally.

Don’t Make Assumptions.

Always Do Your Best.

I don’t really love “gimmicks” for life type of books, but this one seems much deeper and substantial while sustaining its worth for years. Furthermore, it just sounds like a refreshing and happy way to live. Can you imagine never taking anything personally? Sounds awesome. I want to know more, so it’s going on the night stand. And it was FULL PRICE!

10. The Leftovers -Tom Perrotta

OK yes it was on the bargain rack again and no I’ve never heard of it or the author. But it’s a post-apocalyptic thriller type of novel which I don’t read often (like never) and I wanted to mix it up. I threw it in the bag because while the subject matter is dark, it’s also wrough with dark humor (my other best friend). It follows the survivors in the wake of the “Sudden Departure” as they try to go on with life keeping normalcy in mind but, you know, people are missing and the world is all messy. In my small confined life, it felt good to take a risk.

A crash day followed by a crash day followed by a crash day. Somehow it’s worse when you’ve been feeling well. All the years I’ve been sick, all the crash days and months, and I still can’t remember how bad it feels. It always pulls the rug out from under me–more so if I’ve had good health. Over and over, I forget. How incapacitating it is. How depressing it can get. When you’re moving and doing and performing tasks, you don’t think about these things. You don’t have to. You’re fitting in and alongside the rest of the functioning, productive world and that’s how you like it. It’s the best kind of fitting in. Someone asking you how you are is nothing more than a pleasantry and that’s how I like it. No reason to sugarcoat or think twice about the answer. I’ve yet to figure out a response that feels right, so mostly I lie, and I’m a bad liar. I cave easy. But this is one I get away with. I suppose it’s why anyone lies; it’s just easier. It feels good to give an answer that people want to hear. It keeps a hard reality in the blurry background, and that’s how I like that, too.

On day 4 of my crash, I’m laying on my moms couch in the office. My mom comes in and asks if I am still as weak as I’ve been. I quickly reply ‘no’ and that I’m feeling at least a small bit better. It’s a lie. I can tell because saying it out loud causes some kind of turning in my gut; where the truth would’ve provided solace maybe. I feel just as bad if not worse than yesterday. I’m short of breath for no reason and I’m weak down to my finger tips–peeling my banana earlier was way harder than it should have been. I’m dizzy every time I move. I get waves of nausea that are as close to puking without actually puking as it gets. But I lied. I said I was better. I’m left wondering why I did that. I’ve got some ideas.

Not having to think for very long, the answer came. It’s so easy: I’m afraid. I’m afraid that it could mean what it’s meant before. That it won’t go away. That I could be stuck this way the rest of my life. That I’ll never be able to fulfill all the dreams I have or achieve my notebook full of plans and ideas. I’ve had a one day crash turn into a week turn into 6 months. I’ve watched my life turn inside out and be emptied of the good parts. So often it feels like I’m watching it all happen from the outside. At 26 it felt as though the narrative of my life shifted from 1st person to 3rd, and that’s been hard to get used to. I said goodbye to things I wasn’t ready to. The illness took me over and then swallowed everything in my vicinity too. It was hard. It is hard. Some days, some weeks, some months better than others. It’s just been so “good” the last few months. It seems every time I crash I have to confront everything all over again. I think it will be that way until I fully accept and surrender to what my life might be. I already know the challenges I face, I also know it could be a lot worse. That in the end I have everything I really need. And while my life could be bad like I fear sometimes, it could also be good. great even. And the reason I need to let go of that fear is because what my life can be is up to me. Sick or healthy.

I have to remind myself often that a lot of this is out of my hands, which I have to be very careful with. That kind of acknowledgment requiresperspective and reflection and it should never be an excuse. This is surrender, it is not giving up. They are two different animals and mixing them up can heavy the suffering. It doesn’t mean you call it quits and accept that life is shit. I’ve had to draw a lot lines between surrender and giving up and so often I’ve gotten it wrong. I’m ready to start getting it right. Apart from what we’re doing in our lives, the way in which we examine them makes all the difference in its joy or sadness. You’ll know whether you’re surrendering or giving up the same way you’ll know whether you’re telling the truth or not: one feels like relief, the other like defeat. One has roots in reality, the other in fear of it.

I have to stay aware. I have to remain conscious about the choices I am still free to make, and remember that I do still play a part in all this. Of course there are many parts of my life I would change were I able. But how I go about living the rest of my days is in fact up to me. Actually, it is only up to me. Will I choose to react? Will I choose to be a victim? Will I make excuses for myself to justify poor decisions? All of these are possible. And every day I wake up I can think of 100 reasons to choose a darker path. To stew in my own sorrow, to stop trying, to be defeated by something difficult, as if no one else alive is faced with their own challenges. Some that make mine look like a splinter in my pinky. The opportunity to go another route will always be there. You’ll get in trouble thinking that if you choose one good thing, you won’t be tempted by so many other bad ones. You will be. Everyone is, in their own way. Every person has demons to manage and a truth that isn’t easy to sit with in silence, but truthfully this is half of being alive. It’s why you’re a human being and not a turtle in the mud or an insect reacting to stimuli; flying toward whatever is bright.

The funny thing is, what most humans want is control. We like to think we make our own lives and everything is up to us. I disagree with that notion on a few levels and agree with it on others. I know for certain we play a huge hand in our own happiness. But when we get dealt things we didn’t plan for or wouldn’t have picked we feel like we’ve been royally screwed. Robbed. So often I fail to realize it’s not about choosing my hand but how I play the one I got. That has been and always will be up to us.We get to choose how we talk to people and who we surround ourselves with and what we’re going to give our precious energy to each day. What mark will we leave? What will we contribute to the world we’ve been given? Scientists and theologians continue to debate whether we chose to come here or not. Regardless of whether we’re the product of an all-knowing creator or consciousness or the random assimilation of atoms and space, we know for certain our time here is temporary. Loving or hating our life won’t change whether it ends or not. It will end. We don’t get to stay forever. We don’t get a say so in some of the things that were done to us. Every adult has a childhood. Every child had parts that weren’t fair or right. At one time or another, we’ll question every truth we’ve held onto and every drop of optimism we’ve carried. At times we’ll have to fight for our purpose, even if it’s just to get out of bed and make yourself eggs. (That was mine today. Yeah!) We get to choose what we do next with what we have. Will I find a reason to be happy or a reason to be mad? Because I will find both. I can always find both.

I have plenty of reasons to be both. But the last thing I need is to be afraid of what is real. Even if what is real is scary. Life is scary stuff dude. Have you been outside lately?! Even in small doses. Sometimes I have to chop it up smaller and smaller and smaller until it’s digestible enough for me to get out of bed and face the world and find my path and keep going. Doesn’t matter that I know where, so long as it’s forward. The truth moves us forward where lies keep us in the past. Surrender smooths the road for us to navigate with eyes anew, where giving up halts us, traps us in static pause.

I have no idea why even small truths are important, maybe for the reason that even small lies can cause damage. My small truth is that today is the 5th day in a row I feel terrible, and I live in fear that I won’t emerge from it. That the illness has the steering wheel and I’m passenger side. I fear what all the pills I take is doing to my insides. I fear I’ll live with my parents forever. (Sometimes I think they fear it too :) And all of these things are O.K. There’s no need for me to sugarcoat it, lie about it, or fall dramatically somber in acknowledging it. In fact admitting the fear almost instantaneously makes it smaller. Takes away a little of its power. Today I’m unwell, but I’m also unafraid. I expect to get better. Being quiet and afraid won’t rid me of what I fear. So perhaps better to be loud and honest. Life will go on regardless. What I want to be assured of, and what I imagine so many of us want to be assured of, is that we tried. That we didn’t take being alive lightly. I know I don’t live all of my days like that, and that’s a change I’m working on. Imagine if we could all live in our truth, whatever it is, and embrace each day as though we’d never lost. What might our world look like then? Our lives? Our Facebook Statuses?!

This has all stemmed from one small lie I told one afternoon that followed me around all night and morning. Funny that me confronting a grand truth began with a dumb little lie. But something about it makes me feel in my bones that these things matter. Sometimes I see and feel in myself and others that we’re starving for things that matter but are constantly being fed things that don’t. I don’t know how to begin a shift, but I know to make changes on a big scale, we must first begin with ourselves and live honestly. It’s our job to dig deep within, listen to our intuition, and be human for one another, not at one another.

I’m still tying all of my thoughts together. Still looking for answers and often coming up short. Sometimes I can feel the strings of my reality ever so slowly weaving together and making something whole from many mismatched parts. That’s what so many days feel like. Raking through the muck and finding the good parts. Then making sense out of the bad stuff left behind. The fear and pain and anger, there’s a lot of answers in them.

I’m sharing this beginning with anyone reading. (All six of you) Maybe somehow, it’s something we all work towards together. And whether this is just a stepping stone or a small premise for something bigger, it doesn’t matter. This can be the start of something new, even if it’s very very small. And I can look back at this oddly cold day in January, where besides the frozen leaves outside, it would have been business as usual. But it wasn’t. It isn’t. Where a small lie would have left me afraid, a tiny truth burrowed out instead. And in my repetitive life, maybe this is the start of something new.

The Holidays rock. They just do. I feel worlds away when I talk to someone who doesn’t like Christmas. Or Christmas music. Or trees. Or gift-giving. Or ELF. (On repeat!)

Is it excessive? Sometimes. I can admit that. And has Christmas in our country become overly commercialized and sensationalized with the meaning lost in mall crowds, and could we have a long discussion about that over the dinner table? Yeah, we could. But I don’t like going there. I’ve never engaged in the War On Christmas propaganda that inevitably resurfaces each year. And it’s not in the name of denial, but because every year, for a small fleeting time, regardless of my health or where I am personally, the Holidays are a small but hopeful light at the end of a year–where I see more good in the world than bad. Often it’s a reason to become softer, reflective, and thankful. Or do something kind you wouldn’t normally do. If for no other reason than “Well, since it’s Christmas.” I love hearing those words. And I love the simple reasoning behind them.

For my immediate family, Christmas is always the time we give to ourselves to be a family. There are four kids in four states. There are grand-children and extended family and friends who might as well be. But I like that it’s been our staple. Usually it’s not a question of who will be attending Gelpi Christmas but where we’ll be making the noise. And we do, make a hell of a lot of noise. When it’s not me making it, I sometimes plug my ears. :) Life is busy. The work for all of us is different but tiring in its own way. It’s easy to get distracted and let time go by without realizing how many months have passed since we’ve had any genuine interaction. It’s easy for face time to turn into FaceTime and phone calls into text messages and those to turn into Facebook and Facebook to turn into emojis. I mean really, instead of writing this blog post I basically could have just put…

But emojis can’t replace real emotion in writing, just like emails aren’t as personal as phone calls and text messages will never compare to feeling the weight of a hug from someone you love. Admittedly, as the technology advances, it does help increase the amount of contact time between all of us. And thank God for it, because as secluded as my life sometimes gets, sometimes my iphone feels like my only window into the outside world. Technically I met my youngest niece Harlow over FaceTime and spent some virtual “feedings” with her. And I’m extremely impressed and grateful by what can be accomplished over a 2 x3 screen on my phone. It truly is, extraordinary. But still, holding her for the first time beat out those “virtual hangouts” by a long shot. Nothing like the smell of an infant, or getting her to smile. Or watching my niece Olive dance in circles to music or watching my parents enjoy grandchildren or playing cards with my grandma or my siblings annoy the hell out of each other. In a good way, of course! This year my 87-year-old grandma surprised us and came to California for A Very Gelpi Christmas. Show an old woman the capabilities of the iphone and try not to marvel at how far we’ve come and what we’re capable of. It’s a new world, and it’s changing all the time.

Every year at Christmas I always reflect on the previous Christmas. Where was I at this time last year? What has changed? Are things better or worse? And where can I do better? That’s the novelty of an upcoming new year. As they say, It’s never too late to live the life you want to live, and I am always striving to live better. To be a better me. Last year at this time, I was struggling immensely in my health. I had improved from the bed-ridden state but was still feeling awful day-to-day. It was a struggle not to be permanently supine. I found socializing exhausting and far from any fun. It was not one of my better Christmases, but I still enjoyed the tradition of it all, like always. Right after Christmas I relapsed again. I was stuck in Colorado, in and out of bed and freezing my ass off in their record Winter. I remember thinking in my darkest hours and sleepless nights, when the weight and relentlessness of my situation felt too heavy to bare, that this, like all things, would end. One way or another. It was a matter of physics. Time is one of the constants of the world, and it would keep going and eventually things would change. Winter would turn to Spring and at some point I’d lift my head with ease. I wouldn’t be bedridden in Colorado for the rest of my life, even if it felt like it. I remember reciting Winston Churchill’s quote: “If you’re going through hell, keep going.” That’s what I did, and at last, the physics of the world did what it always does. Winter passed. I was given the opportunity to live in a happy house with a lot of windows; just Monty and me. And my health very slowly improved from what it was. And I have truly never felt luckier or more grateful to be where I am. Things aren’t perfect. I’ve still a ways to go. And it’s never far away in my mind that this illness can hibernate and reemerge as if on its own agenda. Sometimes for no reason I can think of. But for now, I’m so improved from this time last year. And it feels good to know, that the reassurance I felt at night but could not see was real. The hardship wasn’t forever–the sun came out and I survived. It’s easy to be disillusioned and overwhelmed by our thoughts in hard times. But how important it’s been for me to remember, to everything, there is a season.

It is 2:31 in the morning on Thursday, December 12th. I am wide awake, besides being restless in the legs, antsy in my mind, and strangely very hungry. I basically just ate dinner in bed. Monty temporarily lifts his head up from sleep at the foot of my bed and sniffs the air to identify what I’m eating should he decide he wants some. He does not. He plops down his head with an exhausted exhale and his belly falls. It doesn’t take him long to re-enter dream world. Me, I am stuck on this side. Reality in the middle of the night. The same as last night and two nights before that. The last few hours have looked a little like this:

.

But lately my problem is not as much my difficulty in sleeping as much as what happens once I finally do fall asleep. I think it might be starting to be a problem. Here’s an except from my notebook from a few weeks ago.

Recently, I took a trip to spend Thanksgiving with my Brother and Company in Miami. I slept in baby Olives room, my one-year old niece. The second night I was there, I had a horrible nightmare. Something I’ve been having more and more of these days. This one wasn’t so much plot based as it was more a series of disturbing images, like those old home movies that play a little choppy from slides. From the start the dream was filled with eerie-ness and unease. I was in a dark place (literally)- similar to a cave but not entirely enclosed. There is nothing pleasant about my surroundings. The aesthetic is dull and drab. I’m walking forward but don’t know where I’m going. I see a full skeleton positioned against a wall, sitting as though it were an alive body, reading or relaxing. As I’m staring at it, suddenly the skull whips its head to turn and look straight at me, and its mouth jolts open. Quickly, harshly, intensely. In a word, it was terrifying. Almost at this same moment, I realize I am dreaming. I find myself trapped in this nightmare, which has happened before and is now happening frequently. I try to scream in order to wake up my brother or sister-in-law, knowing that if I scream they’ll come to the room and subsequently I’ll wake up, escaping the dream. But when I try to yell, nothing comes out. Not only that, my mouth feels glued shut, as though my upper and lower lip were molded together. Consequently I am voiceless. My next attempt to escape is to physically kick and flail my limbs with such gust that the movements shake me out of it- my equivalent of pinching myself awake. But when I try to kick my legs, they’re stuck. They don’t move. They feel as though I’m standing waist deep in thick, dense mud. When I try to move my arms it feels like I’m in a straight jacket. So there I am; trapped in a scene which appears terrifying to me, and unable to speak or move. The strangest part of it all is knowing that it’s not real. Once I have this realization, the fear should fall away shouldn’t it? At any rate, it’s just a stupid skull head with its mouth open. It’s not the first thing I’d like to see in the morning but still, it could be worse. I try and try to scream and move and kick and flail but I can feel all my attempts failing. Silence, stillness, stuck. It’s stressful. The fear is tiresome. Finally, something from the other side makes a peep into my dream. I hear it once. I hear it again. It’s reality calling. Gradually it grows louder and louder, and I dissolve slowly from the dream. It turns to ash as I slowly wake to the bedroom. The reality calling is baby Olive crying. Finally, my eyes open. I can move my legs. I have a voice. I relish the sound of the baby crying. Never have I been so relieved and so happy to hear that sound. I feel bad because it was probably me squirming and making noise that woke her up–trying to escape the cave with the evil skull! But this is how it goes now. I realize I’m dreaming, often it’s a nightmare, and I can’t get out of it without something from the other side, some external force intervening. My mom saying my name, Monty pawing at me or the bedside, my phone ringing enough times to finally rattle me out of it. But never on my own can I get out. My sister-in-law sneaks through the cracked door stepping lightly, hands Olive a bottle and immediately her crying stops. She lays back down in her crib and soon I can tell by her breathing that she is back to sleep. Me, my heart is still beating fast, and I’m thanking God that Olive cried and got me out of the dream.

11-27-13

So there it is. I went a whole week without a computer! Sometimes you just need to feel a pen glide on paper. Anyway, that’s what happening lately. It’s making my nights quite..adventurous. I remember learning in a Psych class once that in our dream phase of sleep, the brain temporarily “paralyzes” the body, so that we don’t jump out of windows or act out the weird things we do in our dreams. So there seems to be a miscommunication somewhere, a mis-firing of neurons between my brain and my body. One says I’m awake, the other says I’m asleep, and I’m caught voiceless in the mud, somewhere in the middle.

As dependent and exaggerated as it may sound, Monty has been my life saver lately. Or dream saver I should say. In my last few nightmares, I’ve called out to him (or attempted to) knowing if he made noise in the room I could get out of the dream. Two nights ago was another very scary one where I couldn’t move or scream, but I remember trying so hard to yell Monty’s name. All I could get out was “Mmmmmmm” because once again, my mouth was glued shut. Even without fully saying his name, he came in my room and pawed at my bed, until I woke up and my voice came back. I hugged him really really tight then, and he slept the rest of the night in my room. (Not on the couch, which he apparently finds preferable) Because the dreams are so real, the fear is so tangible and the images so lucid, even after waking up I feel in an eerie haze. Floating in some in-between world. I often need to look at something mindless to get my head out of whatever nightmare I was just trapped in. (Helloooo Facebook at 3 am) There are plenty of distractions to lift the post-nightmare haze, but in the meantime, I’ve got to figure this out. There must be a way for me to get myself out of these dreams once I’m made aware of where I am. And while I admit there are unpleasant and scary moments in all this, it is very interesting. I’ve always been a heavy dreamer, waking every morning often with detailed streams of dreams playing through my mind. Sometimes I write them down, other times I tell myself I’ll remember and I put it off. But the more I immerse into real life, the faster the dream fades. “Like cotton candy” my mom always says. “Write them down right away!” My mom happens to be a student of Jungian psychology and well versed in the symbols and library of dreams, so since living with her again, she’s been a live in dream-interpreter for me, which is nice. Think about it– there is no clearer or more accessible portal into your subconscious than dreaming. It is hours of our existence that is not interrupted by thought, so I know there are profound answers to be found there. I am her I.T. person and she is my dream analyst. Fair trade.

I’ve learned quite a lot in breaking down the symbols in our dreams. And there is universal meaning to be found there. Do you think it’s a coincidence that many people dream their teeth are falling out? Or that they show up to an event completely naked? Or arrive to take a final for a class they haven’t gone to all semester? Of course each one relates more individually to each person and their life, but this is the human experience. We aren’t so different. I think it’s fair to say there is some objectivity in examining the subconscious without subscribing to some hokey pokey psycho crap. Admitting there is meaning in our dreams isn’t subscribing to witchcraft, as I’ve heard people react when hearing of dream interpretation. We shouldn’t be afraid to go deep for answers. That’s where most of them lie.

I’m going to attempt sleep once again. Monty is here and has been made aware of his duties. “When I start freaking out, you paw at the bed. Got it?” On the next post I’ll have my mom break down some universal dream symbols and go further into these nightmares if they’re still occurring. If anything, it’s another adventure. The riddle now is how to get out.

I’ll admit, I’ve spent a certain amount of time, perhaps too much, fantasizing about the life I’ll have once I settle down with someone. How nice it will be to call a man my husband. To introduce my “better half” at parties, to have a “plus 1” at weddings and someone to sit around and do nothing with. I’ve even set aside a certain amount of happiness as something that will come once I am married, once I’m with my “soul mate.” Whenever I feel very alone or uneasy, I convince myself that those feelings won’t come once I’m with my Mr. Right. I think now though, having a very large amount of alone time- some of it lonely, but more of it not– I realize that the certain loneliness/angst/unease is something I have felt even when in loving relationships. It’s finally occurring to me that just because you’re in love or committed to life with someone, doesn’t mean all the intimate problems of being human go away. I admit there is at least a small amount of fantasy in my thoughts about what my life will be like once I’m given away and married. Instead now, I am learning to really treasure my solitude. Just like anything else, it won’t last.

I was speaking with a friend recently and we were calculating how much of our lives are spent with another person. Which is wonderful for the most part. Science tells us that those married and with families usually live longer and are often happier than those who are alone. But at the end of our lives, it’s often a very window that we actually have just to ourselves. For most people, the first 18 years are under the rule of parents or parental figures. College years are usually spent living with roommates. In the past most young adults were married or on their way to married by the time college was over. More and more however, it’s becoming common to have a new amount of time in our mid to late twenties where it’s just us. We’ve entered the professional world, but not taken on the role of husband or wife yet. Maybe enough of us saw how detrimental marrying too young could be. Or we witnessed the pain and exhaustion of divorce. We’ve seen or were the products of marriages that didn’t look happy and fun– instead they looked like a lot of work and not much else. Increasingly, I see young adults holding off on rushing down the aisle, which I think is a good sign. Till death do you part is a pretty big line regardless of your faith, age, or morals. Probably now more than ever is a young demographic of people living on their own. It certainly can be lonely at times, but I’ve begun to cherish this time where it’s “me” and not “we.”

It seemed my grand-parents and parents generation married relatively young. (My mom was married with two of her four kids by my age, and my grandmother had 4 of her 6 by now) I couldn’t help comparing my age and progress to theirs for most of my mid to late 20’s– but I’m making a conscious effort to stop doing that. And I’m also beginning to see the value in a young adult life that is spent without a husband or partner. I also realize that finding and being with your “soul mate” or partner doesn’t mean an end to loneliness or angst all together. In fact, in many of my loneliest moments, I’ve actually been in a relationship, but felt completely unseen or misunderstood. One might say that being in a relationship that you want out of is one of the worst versions of angst there is. This is why it’s silly to put all my ‘happiness eggs’ in one marriage basket. A ring and a contract doesn’t equal an end-all to personal struggle, challenges or pain.

I have to remind myself there is no timeline. Some women and men find lasting love at 18. Some at 38. All it takes is a few minutes on Facebook to see that many girls my age have married already and started families of their own. I used to look on with some amount of jealousy– some feeling to rush this chapter of my life so I could start the married one. But I also know you can’t really force falling in love. Or meeting your dream person. I have been in love a few times and met really wonderful people. But I’m not married yet because it hasn’t been right yet. Some say it’s a matter of timing. Some say it’s fate. Some say you’ll meet Mr. or Mrs. Right as soon as you stop looking. (I can testify that it is often when I’m happy and fulfilled on my own that I end up meeting someone who adds significance to my life that I didn’t know I wanted or needed.) At any rate, the goal should always be to find happiness, wholeness, and fulfillment on your own. Putting off your total happiness until someone you’ve deemed the answer to your prayers, i.e. someone you haven’t even met yet, is not only reckless but dangerous. Someone else won’t be able to fill you up if you haven’t learned to do so on your own. I think the healthiest and most romantic of love comes from two people who don’t desperately need each other, but just genuinely love and like each other so much they just want the other around–forever. I know too that knowing yourself well is a huge prerequisite in finding someone to love well. We can’t expect other people to fill up holes within us. When you get down to business, that is up to us.

Looking back at relationships in my life, and also looking at recent time spent alone, I see that sometimes I lose myself in love. I don’t write as much. I don’t seek creative outlets as much. I fall into comfortable habits instead of seeking newness. To specify, there’s nothing wrong with that. I can’t wait until my Saturday nights are spent with my husband in bed, asleep by 11:00 pm. But I also have begun to see the advantage in being alone. I’m more productive in the arts, which is an important realm of my life. For instance, I’ve spent the last few days drawing and making water colors. (Also listening to jazz–my brother Nick’s suggestion) I know that were I in a relationship right now, I wouldn’t have done these. Not that they’re great pieces of art, not that I can’t do them when I’m with someone, but for whatever reason I usually don’t. And I like just allowing my soul to let out whatever it needs to without the interruption or expectations that come when in a relationship.

“headache”“politics”“birds”“dick cheney”

Besides setting apart time for art, I spend more time with my parents. I read more. I don’t have to compromise on TV shows I want to watch. (Watching Say Yes to the Dress as speak) I see my brothers and sisters and nieces more often. There’s no argument about where I’m spending Christmas. For the most part, I spend time how I want with who I want and there is a freedom and casual thrill in that. Ultimately, I think human beings are meant to find our counterparts, and still I look forward to meeting my person. Life feels incredible when you find someone who shares your intimate perspective. No one can argue with the pure and ridiculous happiness and high that comes with falling in love. But on the other hand, it’s important to examine the time you have with yourself and you alone. I think of the time I spend daydreaming about marriage and babies and family life. Maybe I’ll always do that. But the other day I had this image: me, married, a house noisy with children, reminiscing about that time I lived in my parents pool house, the days mine to spend how I wanted with my dog Monty. Staying up late, sleeping in, writing, reading, drawing, and creating. I remind myself to be grateful for this time in my young adult life; alone but not really lonely, preparing for what’s next, whatever that might be, whoever it might be with. Time to treasure what I have now– a whole lot of me and Monty time. :)

It’s Friday night and I am alone and having one of those days. If my disposition were weather it’d be grey and off and on drizzly. If it were a band it’d be Coldplay. If I were a reality show character I’d be Bruce Jenner in those transition lenses he wears. OK so the point is it’s just been kind of a depressing day. For no particular reason but a few small ones and others I can’t pin down. I’ve had this headache which is also all over my face–for a week– and it’s not responsive to pain killers and it’s not a migraine. My whole jaw hurts blah blah blah. It’s been tough trying not to let the pain get me down. I think at some point it’s not the pain anymore that gets to you, it’s just not being able to offer your focus and energy to other things. It’s like a hangnail. Even a small pain just steals your thoughts, and after a while its annoying and exhausting. This is the point where my friends would make a joke about how bad my headache must hurt because I have such a big head. And then I’d say “thanks guys” and then we’d watch The Kardashians.

Anyway, for someone who loves being alone, thrives at being alone…I suddenly had that empty lonely feeling. And I don’t have it a lot. I really treasure solitude. But suddenly I had that feeling that I was the only person at my house at night and the world was at this party the world was partying and I was missing out and it made me a little sad. You know what the worst part of being single is? It’s not having someone to do nothing with. See a Friday night stayed in and watching crappy TV with someone you love is great. Or it feels fine anyway. But alone, crappy TV can get real sad. The other issue I might have is that I have a total addiction to my dog admittedly and I think it might be a problem. I can’t tell if it makes me the most kickass dog owner ever or the worst human being. I hang out with him a LOT and take him basically everywhere. And I worry about him when he’s not around. I wish I could nonchalantly yell “Oh it’s JUST A DOG” like so many people I hear. When does it become concerning? I think I’ve reached the point of concern, I’m not sure though. Although I DID go on a date last week and we ended up at a bar called the Bulldog because they allow dogs there and I definitely took Monty. But come on that’s normal. I’ve always let Monty pick my men. I’ll tell you about that date later. I guess. I just realized I don’t know who you are or if you’re reading and also why I’m writing this blog about absolutely nothing especially on a nothing night like tonight. But I’m in a careless enough mood that I’ll keep going. I mean clearly I have nothing else to do.

So it’s Friday night and I’m sitting on my couch and there is shit on TV. Alaskan Women Seeking Men, I Hate My Butt!, Last Call With Carson Daly. (How is that show still on?) I’m antsy and looking around at the walls of my living room. Disconnected thoughts are filing in and out of my mind. I consider rearranging the pictures I’ve hung. I consider rearranging the furniture in different ways. I wonder how many headache meds I would have to take in order for the pain to go without shutting the rest of my body down. Too many, I’ll try ice. I consider cutting my hair. I wonder what book I’ll read next. I want to read more. I need more books. Then I look at Monty. He was licking his butt. He felt me looking at him and stops and stares. “Monty,” I say. “Am I the most boring person in the world?” I swear to God, he yawned one of those huge yawns that’s like too large for his face and makes it vibrate at the end. Then he looks at me a few seconds more and goes back to licking things. I can’t explain it but I completely busted out loud laughing. Maybe at the tragedy of it all. How pathetic the night is and how even Monty knows it. Monty comes over, jumps up on the couch and laid his head on my lap. It felt awesome. I know I might have a problem with not pushing my boundaries enough socially and being a homebody and yada yada. But sometimes it’s just so nice; just us two. I know I need to try harder, but honestly, this often feels like enough.

PARTY TIME

It’s funny how small we can feel sometimes. When you think about the entire earth and how many people are on it and all the important things everyone is doing you start to question if you’re doing enough. Especially when you’re watching Alaskan Women Seeking Men. I don’t think we were put here just to play around. It’s a recreational world too and we shouldn’t forget that either. But I think it’s time for something new. And maybe that just means a haircut or changing my living room furniture or doing something significant like taking a risk and doing things that aren’t comfortable. I don’t know yet. But for real the seasons are turning and something is turning in me. Truly it was an OK week. I got a lot of writing done and hung out with my dog a lot and I picked flowers when it was nice outside. I am alone on a Friday night. And for a second that felt awful. And then it all felt like enough. And for now, enough is enough.

There were a few things I was going to write about this week. One was a response to an article that’s gone viral about why Generation Y is so unhappy. I almost wholeheartedly disagree with it, but I couldn’t finish. The second post was a “Breakup Playlist” that was really just a list of happy songs I composited that get me excited and I can’t help but dance to when they come on. And sadly, yes, a lot of the dancing I do these days is alone. But I enjoy it so lay off! The third was an observational piece about how impersonal life can be in the digital age of social media, where so many things are taken at face value and how someone’s online presence can be so far from the person they actually are yada yada yada. I began writing on all of these topics as my scattered mind couldn’t focus on just one, but there was something more important that kept nagging at me while I worked. Finally, I pulled the plug on these ideas. I’ll work on those later (unless they end up terrible which right now they are), because this post is for you, the reader. Because even though I sometimes have these grand ideas I I can’t wait to unleash, sometimes something else comes knocking and demands to be written. At that point there’s not a lot I can do except listen; type out the words and let my heart do the talking. There’s plenty of time for break-up playlists. This was something I needed to say now.

I’ll be honest, having a chronic illness, especially when it’s at its worst like it was for me most of last year, can be terribly lonely. As much as I love my friendships and romances and strong family bonds, it’s nearly impossible to keep them all up when you’re sick. One but more likely all of them will suffer. Last year the relationship I was in ended and as my health steadily declined, so did my social life. I remember just not answering the phone when it rang. I felt like I didn’t even have the energy to explain my mood, my condition, or apologize yet again for being a crappy friend or sister or whathaveyou. One of the hardest parts of the illness has always been what it’s done to me and the outside world. Last year was a dark one, but I was lucky enough to have family who took me in, and friends who were understanding when we went months without talking. I always liked that definition of a friend- someone who knows you but loves you anyway. :) I’ll say that being sick sort of dwindles down who the key people in your life are. Some survive the storm and some don’t, and it’s not really anything personal. Some people have needs you’re not able to meet with a condition like this, and truly you can’t blame them. I am an admitted flake, terrible at keeping up and correspondence, and I cancel at least half of the plans I make. This is mostly the fault of the illness, and it’s understandable why not many friendships are upheld through it. My circle is small, but I love everyone in it dearly, and they certainly love me back considering what they tolerate.

I think last Fall was one of the hardest times in my life. I was living in my sisters house in California. Home away from home away from home. I initially planned to go there for a month, but when my crash worsened and things like walking became hard, I ended up staying until Christmas, and everything felt out of control. Because it was. I was a difficult person then, and I feel a little bad for my behavior. My sister would always ask me to go eat dinner with her at my brother-in-law’s restaurant, but the thought of small talk with people I didn’t know was overwhelming. Sometimes it put me in a bad mood just thinking about it! I actually preferred being alone. I often felt more alone when surrounded by people but completely isolated on the inside. I hated who I had become–such a solitary hermit. But I truly just didn’t have the energy to even be polite. It was easier, and better I think, for me to just stay home. Which sounds terrible and depressing. Healthy people won’t get it. But truthfully relationships of any kind take work, they are two-sided, and I just didn’t have enough to give at that point. But the real reason I’m writing about this is because, beyond all the crappy days and reclusive tendencies, there was this community built on the blog. People reading it and commenting, people sending emails of gratitude or support or encouragement or all of the above, and it was truly remarkable to receive feedback like that, especially at a time where I felt really alone. I knew there were others like me and I wasn’t suffering alone. And although I didn’t know any of you truly, I knew of you because you reached out and were honest, and I read every word. It meant the world to have complete strangers rooting for me, some in other countries. It felt incredible not purely for personal reasons, but because I saw just how much positivity and love and support could be garnered by so many people who didn’t even know each other. It still gives me chills to this day; it shows what can happen when human beings come together for something good and optimistic. I think we’re all looking for a reason to be good. And while no, it didn’t cure me or fix all the problems, it did give me a real sense of hope that I could get better, that it wouldn’t always be like this, and even at times that if I never got better, this wonderful energy was still created and circling around the world. I didn’t do it, we did it. We put that out into the universe, and there’s something kind of magical about that. We’ve created some good together, and I think it’s something to be proud of.

Last week I posted about a promise I had made to myself years ago: that I would celebrate my 30th birthday in Paris. When I read people’s responses and support and encouragement for me to do something purely because it would make me happy and in turn, them happy, I felt the most love I ever have laying in bed and looking at a computer screen. Strangers telling me to go for it, that they’d donate money for me to do it, and insisting I go regardless of circumstance, was truly inspiring to me. I felt connected and after such a crappy year last year and feeling so far on the outside, watching everyone else live their lives while I felt like I was crumbling internally, that was such a powerful thing for me to feel. And needed to feel I should say. It’s easy to get stuck on your story, to live life from the outside looking in, to let things pass you by. But after seeing such a positive reaction from people, and seeing how me going after my dream and living with purpose was encouraging others too was simply unreal. But mostly, it was an inspiring and and abundant source of love to feel on my end. And that’s stuff you just can’t buy or put an amount on. It is truly priceless. So for that I want to say thank you. THANK YOU. THANK YOU A LOT. I felt a very long time ago that this blog wasn’t really just about or for me. It was for something greater. And I know that now more than ever. It’s about all of us.

As summer turns into Fall, (unless you’re in New Orleans in which case it’s still 90 degrees and there’s a tropical storm headed our way) I am reflecting on where I was last year at this time. I had no idea that some of the hardest months of my life were about to unfold. And in the darkest of times, moments where I couldn’t find myself in the world, I would always come across the words in a comment or an email from a reader that reminded me of something very simple but very important– I wasn’t alone. And if you’re reading this now, going through a hard time caused by anything- health, heartache, loneliness, insecurity, whatever- I hope you’ll know that you aren’t alone either. It was in those very dark but small moments, that the tiniest crack of light would shine in and let me know, we truly are all in this together. We’ve all got our battles, and we all experience things that make us question who we are and where we’re going and if we’ll ever get out of the hard time we face. I’m here to tell you, you do. I did. Many times actually. And the hard parts aren’t over. I am relatively young and life won’t stop throwing boulders or pebbles across my path. (If you’re listening God, I prefer pebbles. But, you know, do what you gotta do.) I just feel that one of the most important things that could ever so slightly drag me out of the dark, was this interconnectedness I’d feel with humanity, even though I had no social life…at all. Granted my sister tried, but I was mostly a grumpy curmudgeon. Sorry Amelie! Anyway, things have gotten better. My health, while still a major hurdle, is not nearly as bad as it was this time last year. I’ve reunited with friends. I wear pants a lot more now. ;) But it feels good to know that while last Fall was let’s face it, a shit show, I re-emerged. As we all do and will, if we can only hang on, remember that nothing is forever, and as lonely as it can feel, we are never truly alone. I mean it. And I’m alone a lot!

So, that’s it. Among all my other ideas, this one wouldn’t leave me alone. And I want to tell anyone reading, I read every comment on this blog and every email regarding it. I don’t always respond (I told you I’m a flakey friend and terrible with correspondence!) but I honestly take time and read all the feedback sent my way. And I LOVE hearing from everyone. The funny thing is how many emails begin with “I’m sure you get thousands of these but…” I assure you that’s not even close to the case. A few a week at best!! All of you have your own battles and wonderful, sometimes sad, sometimes hilarious, stories of tragedy and triumph, and I relish in reading them. I wish there was a scientific or spiritual way for me to prove or convey this, but all of that positive and loving energy sent my way goes right back into this project and the world at large. It’s such a cool community we’ve set up here. Remember this all started with two followers: my sister and my aunt Amy. And look at us now! :) Thank you for reading, writing, laughing, and crying with me. The community we’ve built is invaluable, and I always turn to it when I feel myself leaning towards seclusion or sadness. I hope you do the same. Because half of writing anything is having someone to read it. I think we’ve done well. Again, a million times over, thank you.

Have you ever promised yourself a gift? Something unnecessary, something perhaps even excessive, but something just for you, from you?

When I was 22, I left America to study a spring semester in France. I had always been drawn to Paris– the French, the language, the lifestyle–but I could never pinpoint why. I just felt I needed to go one day. I became so philosophical about wanting to go there and not understanding what was fueling my desire that finally I called my brother Nick in a strange self-induced panic. “I want to study a semester in France.” “Great!” he responded. “But I have no idea why!” A pause. “Who cares?”

It was my freshman year, and I often called Nick with my college-born troubles. I remember him telling me with such sincerity, “Mary, don’t think to hard about it. You want to study in France, so study in France! You’ll know why once you get there.” He was correct. Three and a half years and a crap-ton of paperwork later, I packed two ridiculously sized suitcases and prepared for life abroad.

Technically, the timing couldn’t have been worse. I felt very troubled leaving. It had been one of the hardest years of my mom and I’s life. Just less than a year earlier my step-dad died suddenly, and everything sort of stopped. None of us were prepared for that. As if that wasn’t hard enough, a few months later my black lab Brusky, who had just turned one year old, developed an infection and also died suddenly. Brusky was one of the only positive things my mom and I could count on that year. When things became intense or overwhelming or sad, he’d always do something to make us laugh. He was truly a wonderful dog. He was my sunshine. And when he died that morning, I really felt forgotten. There was an empty feeling of chaos inside. I watched the world spin on but I felt stuck standing still. I was jealous of happy people. I was doubtful for our future. And I was losing faith that we could ever be happy again. It was partially the reason I went to France. At that point it felt like I didn’t have a lot to lose.

But I was the last kid left in Louisiana. Most weekends I drove home from school to be with my mom. There are so many logistical things to tend to after someone dies. Just cancelling his cell phone with AT&T took months and months. My mom always told me to stay at school. That I didn’t need to come home and that she’d be fine. But when you see a parent lose someone they love, you see a piece of them go too. She’s tough, and she rarely reaches out for help. And that was mostly the reason I went– so she wouldn’t have to. When I received the acceptance letter to a university in a small town in France called Besançon, I was immediately excited and then immediately distraught. How could I leave my mom at such a pivotal time? She insisted I go. Insisted she’d be fine. The last thing she wanted was for Roger’s death to hinder us. I grappled with the idea of staying and the idea of going. Finally it felt like I had to go. If I stopped exploring, learning, living, loving, trying, then I’d have let fear and doubt and melancholy take over. We had to keep living, both of us, and maybe while I was gone, something wonderful could happen to her too. It didn’t make our goodbye at the airport any less sad. I held it together as best as I could, but still I felt the fear and the doubt and sadness right there on the surface. We hugged goodbye and I prayed all the way to Paris. It was the only thing I could do to keep my confidence alive in a decision that I wasn’t outwardly sure about.

Once in France, my brothers words rang true. Meeting amazing people who are still incredibly close friends. Watching the first snow fall. Cafe au lait and croissants and vin chaud and ridiculous business hours and cafes and little French children. It was perfect. All of it. I fell in love. With the country, with a boy, with my friends, and my life there. “This is why,” I thought. I’d found my answer. Something in my soul must have known I’d find happiness there, at a time where I’d forgotten what happiness even looked like. I lived in a space maybe half the size of my bedroom now with a twin bed and a desk, and I have never been happier. Best of all, I felt vibrantly alive for the first time in a long time.

Happy, oui.

Not only that, but while I was gone, my mom said yes to a coffee date, with extreme hesitance. A friend convinced her it was only coffee and so she went. The coffee date turned into a dinner date. Which turned into an every meal date, and falling in love and happily ever after. Would that have happened if I would’ve stayed? We’ll never know, but I’ll always wonder.

When leaving after an adventure like that, you make a lot of promises. You think you’ll go back. You think you’ll stay in touch with everyone. You’ll carry on traditions. But these are more optimistic than realistic. The real world resumes on when you return. (It’s awful!) Although I made two best friends there, one of which is My Stupid Friend Jess, very few of us stay in real touch. We reminisce. We get sad when we think about the fact that if we all went back now, it wouldn’t be the same. Our experience was wonderful, carefree, spontaneous– but impossible to repeat. It was five and a half months of not living in the real world as we know it. School was very easy, teachers were lax. They encouraged you to immerse yourself in any and everything, and if that meant missing class, pas de probleme! I loved it. It was truly perfect.

But I did make one promise that I have always intended to keep. I promised myself that I’d return to Paris and celebrate my 30th birthday there. I’ve thought about this promise throughout the years, and I think over the last two years I’d sort of lost hope and resorted to the idea that Paris wouldn’t happen. But when I turned 29 this year, that promise seemed to reignite inside me. I realized it’s only impossible if I say it is. I have a year to make this wish come true. I have no idea why I made the promise for my 30th birthday. I probably assumed I’d be wealthy and successful by then. Hahaha!!! Life is funny.

So I’m not exactly wealthy and successful (yet) but I still have 10 1/2 months until my 30th. A lot can happen in that amount of time. I know that work is required of me. I know there is a way for me to have this illness but still contribute in a meaningful way and support myself and Monty and pay back all the debts I’ve incurred along the way! I truly think it’s possible. I constantly see items on TV or in magazines and think ah, when I’m a millionaire, I’ll totally have a temperpedic mattress and my own jet for travel so I’m not subjected to modern commercial air travel. They are fantasies, sure, but something tells me they could really happen. It’s not like this type of success doesn’t exist. It’s not impossible! It’s just going to require getting creative. Most people don’t make millions from bed, but it’s not that far off the radar. I mean the Kardashians did it!

Anyway, I don’t have the money yet but I haven’t aggressively tried to get it. I’ll need to strategize. And maybe I won’t be in great health, and it will be different than last time and I won’t be able to walk the city as freely. But I’m going to turn 30 no matter what. Here or there. And if I’m sick here, why not be sick there? I don’t mind being sick in Paris! And if it’s just me, alone on a terrace, watching the Eiffel from afar, that’s great too. As long as I am choosing life, and honoring my passions and keeping my dreams alive and not stifled, I don’t think I can really go wrong. I don’t know how this is all going to fall in place, but somewhere deep, someplace where I once felt that initial drive to go and didn’t know why, I feel that it will happen. And if I keep letting the illness infringe on every dream, I’ll never get anywhere. Things will stay the same. And once you stop dreaming, what is the point really? This was a promise I made to myself. Not for a boy, not to prove anything, just a gift I promised to my soul. Last time I left, it was a troubling time and I was uncertain, but once I arrived it all made sense. It appears to be that way again.